Medical Hero Spotlight: Dee Burlile, Scleroderma Clinical Trial Participant & Patient Advocate

Living with Scleroderma

For years, Dee Burlile struggled with various GI symptoms, joint issues, and sensitivity to cold and heat in her hands, unsure of what the cause could be. A busy mother of three young children, Dee’s health took a dramatic decline the day before Thanksgiving in 2011 when her youngest child found her having a seizure in their home and called 911. Her children’s quick thinking saved Dee from cardiac arrest, and she was stabilized in the hospital where she remained for treatment.

“I was incredibly sick, losing about 40 pounds in two months,” Dee recalls.

After leaving the hospital, Dee needed at-home nursing care to help manage her declining health. Living in Idaho with her family, Dee struggled to find a specialist who could diagnose her condition, eventually going out of state for her healthcare. In 2016, Dee made a trip to the Mayo Clinic in Minnesota where she was finally diagnosed with systemic sclerosis. Systemic sclerosis or “Scleroderma” is a chronic and often progressive autoimmune disease that affects connective tissue and can cause serious damage to internal organs including the lungs, heart, kidneys, esophagus, and gastrointestinal tract.

The symptoms of scleroderma can vary from person to person. For many, scleroderma causes noticeable tightening of the skin. Unfortunately, Dee’s scleroderma was causing significant damage internally to her organs. Since the beginning of her medical journey, Dee has undergone 21 surgeries, including bilateral rib removals, and four organs removed, including a colectomy to remove her colon. While some of her regular treatments have been in Idaho, Dee has had to travel for most of her surgeries and specialized scleroderma medical care, incurring financial costs.

“It’s been quite the journey not just for me, but for my entire family,” Dee says. “As a mother, there is a feeling of guilt that I can’t shield my kids from the reality of my illness. When someone in a family, especially a parent, is struggling with a disease, it can take a toll on the mental health of everyone, especially kids. They’ve seen me struggle with insurance company denials, delays in medication, and that ultimately affects all of us.”

Dee’s husband is a veteran living with his own disability. The couple work to fill in gaps for each other as best as they can, but Dee admits that the constant work needed to maintain their health, financials, and keep up with other responsibilities can be daunting at times.

Advocacy Work & Clinical Trial Participation

Since her diagnosis, Dee has connected with dozens of other patients living with scleroderma. In 2016, Dee attended her first patient education conference, where the experience sparked her interest in pursuing advocacy full-time.

“Sometimes I feel resentful for my disease because it keeps me from working. I graduated with full honors and worked as a victim witness advocate. Not being able to do that feels like a waste, and so if increasing awareness and being an advocate for scleroderma is what I can do, I will,” Dee says.

Over the years, Dee has participated in advocacy training, and gotten involved with groups like the National Scleroderma Foundation, Idaho Arthritis Walk, Arthritis Foundation, Trevor’s Trek Foundation, and Patients Rising. She has participated for several years in Advocacy Awareness Day on Capitol Hill to raise awareness with elected officials regarding health insurance, chronic illness, and scleroderma. Dee has also participated in clinical research which she believes is critical for finding medical advancements for scleroderma. In the past, she has been in several studies aimed at combatting fatigue, ILD (Interstitial Lung Disease), and other symptoms of scleroderma and has also submitted genetic data for testing. Currently, Dee is in a trial for a new medication that is going very well for her.

Despite her success with clinical research, Dee notes that over the years, only two of her doctors in the state of Idaho have shared information about clinical trials. Other research to find trials was done by Dee independently, which she explains can be difficult and overwhelming for a patient.

“I wish I had known how many clinical trials were available. I think there is a major gap in communication between physicians and patients when it comes to sharing clinical trials as a healthcare option, and it’s concerning,” Dee reflects.

Dee’s advice to someone interested in clinical research is to weigh the risks and benefits, fully understand what you are committing to, and participate only if it makes the most sense for you.

Waiting Room Entertainment

Through her advocacy work, Dee met Amy Gietzen and Demi Montgomery, other women living with scleroderma who are passionate advocates and want to make a difference in their patient community. Since then, they’ve gone on to work on various projects together, including the creation of The Waiting Room Entertainment. “We’d like to bring resources and knowledge to scleroderma patients and other patients living with chronic conditions who are trying to find out more about clinical trials, or just need a community to support them. We’ve created a social club where patients can meet and connect,” Dee explains.

Looking Ahead

Although living with scleroderma has been difficult, Dee feels incredibly lucky to have the support of her family and friends. Her community and her new connections made through advocacy work have helped lighten the burden of living with her disease and given her hope for a future with new medical advancements. “I try to be positive with my kids about my disease and my differences physically like my ostomy bag,” Dee says. “After my surgery, my daughter who wanted to understand what I was going through, made her own ostomy bag and wore it for a day. I was floored by her empathy and thoughtfulness.”

Additional Resources:

https://www.youtube.com/@thewaitingroomentertainment
https://scleroderma.org/
https://idahoarthritiswalk.com
https://arthritisfoundation.org
https://www.patientsrising.org/
https://trevorstrek.org
To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

For volunteer opportunities with CISCRP, visit our Volunteer page.

Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org

The Importance of Patient Engagement and its Role in Clinical Trials

Life is full of decisions. From the moment we wake up until the moment we go to bed, we make decisions. About what we wear, what we eat, the next show to binge.

What about the decisions we make about our health? Do we make the decision to exercise regularly? Do we decide to drink water instead of another cup of coffee? Making informed decisions when it comes to our healthcare can be overwhelming, which is why patient engagement is so important. Studies have shown that when patients are more actively involved in their healthcare, they experience better health outcomes.

Patient engagement relies on the interaction between healthcare providers, caregivers, and patients to make good healthcare decisions on behalf of the patient. Ultimately, it’s up to the patient to take this information and make an informed decision about their care. An informed decision involves the patient taking all the information related to their care, weighing the benefits and risks, and making the best choice for themselves. But how do patients cut through the medical jargon to understand what’s being said?

This is where plain language (sometimes called “lay language”) comes in. Lay language is a way to communicate with patients in a way they can understand so they can make informed decisions about what’s best for themselves and their families.

Perhaps one of the most important informed decisions a person can make about their health is whether or not to participate in a clinical trial. With a growing demand for participants to enroll in clinical trials, the need for patient engagement—and more importantly, plain language—comes into play.

Coupled with patient engagement is a growing demand for plain language materials that help readers understand the importance of making informed healthcare decisions. CISCRP is a clinical research education company dedicated to producing high quality plain language patient engagement materials aimed at helping participants make informed decisions on their health.

Offering a wide variety of services, from trial results summaries to a range of educational brochures, CISCRP leads the charge in effective, easy-to-understand patient engagement materials. While many sponsors understand and believe in the importance of patient engagement—more specifically, providing trial results. A 2019 perceptions and insight study found that 61% of participants did not receive any reports on the results of their trial. Partnering with sponsors, and under guidance from the EU CTR, CISCRP has been able to provide thousands of plain language summaries of trial results for over 15 years, giving back to participants the results of their trial in language they can understand. These summaries are a critical aspect of helping patients take an active role in their healthcare. By helping them understand the trial they participated in and its outcome, participants are empowered to make better decisions going forward.

CISCRP is a committed leader of empowering participants to make informed decisions about their health. Learn more about CISCRP’s mission and services here.

Written by: Jacqueline Ruzicka

References:

“Health Policy Brief: Patient Engagement,” Health Affairs, February 14, 2013.

“Why Patient Engagement Is Important In Healthcare,” Sequence Health, April 7, 2020.

The Center for Information and Study on Clinical Research Participation. ciscrp.org

“CISCRP’S 2019 Perceptions and Insights Study.” CISCRP, 30 Sept. 2019, www.ciscrp.org/ciscrps-2019-perceptions-and-insights-study/. Accessed 5 Apr. 2023.

Medical Hero Spotlight: Tom Smith, Rare Disease Advocate & Patient Engagement Consultant

Living With Cystic Fibrosis

Tom Smith has never known a life without cystic fibrosis (CF), but it has not limited him or the work he does as an advocate for rare diseases. Although cystic fibrosis is a rare disease, it is one of the more common rare diseases in the UK, affecting about 1 in every 2,500 babies. Diagnosed at only six weeks old after experiencing severe breathing difficulties, Tom says that he was lucky doctors were able to identify his disease so early on so he could begin treatment.

“This was in the 1980s, when cystic fibrosis was a death sentence. The average life expectancy was only about 35 years. Things are very different today! I’m 35 years old now and expect to live a lot longer,” Tom says.

For Tom, childhood was relatively normal, and he recalls only a few instances of being hospitalized. “Until I was around 15 or 16, I felt the same as everyone else. As a teenager I became more self-conscious and wanted to fit in with my friends. I didn’t want there to be anything different about me,” Tom recalls.

Tom began putting off his daily treatments, which led to a decline in his health and more frequent visits to the hospital to stabilize his condition. Although with time, Tom’s health improved and he began prioritizing his treatments again, he still struggled with the emotional toll that can come with having CF. “Cystic fibrosis isn’t outwardly visible on most people. It was the secret that everyone knew about me, but that I never talked about. I felt like an intimate part of my identity was always being exposed,” Tom says.

Innovations in the CF Community

Over the years, the cystic fibrosis community has built up patient registries and multiple advocacy groups that have led to major advancements in treatment. “In the last 10 years, new disease modifying treatments have come on the market, including one that I have been taking because it aligns with my specific mutation of the disease,” Tom says. “It’s been incredible for me.”

For the first 2.5 years of his relationship with his wife, Tom’s morning treatments and physiotherapy appointments prevented the couple from spending a full day together. Thanks to his new medication, Tom hasn’t had to go to a physio appointment in two years and has much more energy.

“What is difficult in the CF community is that these medications don’t work for everyone. The drug I take works for most mutations but not all,” Tom explains. “There are large groups of people that are excluded and who are watching others with their disease have life-changing transformative experiences that they can’t join in on.”

In the past, Tom has applied to participate in a clinical trial, but was ineligible based on the criteria. However, he remains a major proponent of clinical research, an industry he has become very involved with, especially concerning patient engagement.

Working as a Patient Engagement Consultant

Beyond his own experience of living with a rare disease, Tom has spent much of his professional career exploring the role patients play in shaping clinical research and advancements in treatments. “Many are surprised to know that I don’t do most of my advocacy work with CF groups,” Tom says. “For my personal journey into this space, I’ve felt that only speaking and working on projects for CF is limiting in terms of my goals.”

In his early twenties, while trying to connect more with his disease, Tom found a group called Genetic Alliance UK who advocate for many rare diseases. They were looking for people to help them create materials about genomic medicine, which Tom was interested in. “That was my first experience writing plain language materials for patients before people really knew what it was.”

From there, Tom’s connections in the world of patient engagement grew exponentially. He attended a patient’s forum training session in Vienna where he was introduced to a member of The European Health Parliament. Tom applied and joined as a committee member, where he now works to shape policies that benefit patient communities.

Since then, Tom has picked up a variety of other projects, including working as a research ethics committee member for the Health Research Authority, serving as a faculty member at the European Forum of Good Clinical Practice, and working as a consultant for sponsors, medical communications companies, and regulators.

Within the clinical trials industry, informed consent and plain language are two areas where Tom enjoys taking on projects.

“Patients still receive documents that are 8,000 words long and full of complex medical information. They have to consent to move forward with treatment, even if the average person usually can’t fully understand what the materials say. That’s why I’m passionate about the intersection between patient engagement and industry and making sure that patients have a voice within the trials being conducted for them,” Tom says.
Encouraging Advocacy

Tom describes himself as someone who is always itching for a new challenge professionally, and he encourages other people living with chronic conditions or rare diseases to consider advocacy. Tom sees patient engagement as an “ocean beneath our feet”, with the potential to bring forth new treatments quicker, save pharmaceutical companies money, and empower patient advocates to be compensated for their work.

“We’re in the shadow of hundreds of years where doctors have controlled the outcomes for patients, when so much more could be accomplished if it were more of a partnership,” Tom explains. In his own experience, Tom has noticed that many patients settle when it comes to advocacy work because they are just excited to be involved. “If you begin advocating for yourself and your community, you can change your life! Make sure you’re being fairly compensated for your time and effort.”

All patients in a disease community are important and bring unique value. For meaningful advancements to be made, all voices need to be engaged. Tom advises patients who might be interested in getting involved in advocacy to find what interests them and start there.

“You don’t have to fit into any box as an advocate. If you’re not sure where you belong or where to start, just do what you enjoy.”

Additional Resources:
https://www.cff.org/
https://geneticalliance.org.uk/ 

https://www.hra.nhs.uk/

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

For volunteer opportunities with CISCRP, visit our Volunteer page.

Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org

What is a Placebo?

If you or someone you know is considering taking part in a clinical trial, this brochure is for you. It is intended to help you understand what placebos are, and why they are used in clinical trials. We developed this brochure together with subject matter experts, patient advocates, and members of the public, to make sure the topics, language, images, and design are appropriate and engaging.

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This brochure was also reviewed by an Institutional Review Board (IRB), which is also known as an independent ethics committee. The IRB review ensures the brochure follows ethical guidelines for providing information about clinical research to patients and the public.

Topics Include:

  • What is a Placebo?
  • Why are Placebos Used in Clinical Trials?
  • How Placebos are Used in Clinical Trials
  • Will Participants Receive a Placebo
  • Are Participants Told if They Receive a Placebo

Behind the Scenes of Health Literacy at the Movies

In October, CISCRP’s Health Literacy team worked with a Top 25 pharmaceutical company, to create an infographic celebrating Health Literacy Month, marking the second year of this collaboration. Last year’s materials included an infographic with tips for implementing health literacy best practices and a health literacy crossword puzzle. This year’s infographic contains an exercise to help readers brush up on their health literacy knowledge and think about the importance of keeping health literacy front-of-mind.

CISCRP creates many materials designed to improve health literacy, including videos and brochures. While the general education these provide is important, it is also important to understand the concepts behind their creation. In these Health Literacy Month materials, we unpack what health literacy means, how health literacy principles can be put into practice, and who is responsible for facilitating health literacy. Stay tuned for a look behind the scenes at the concepts highlighted in this infographic.

The theme of the infographic is health literacy at the movies. Health literacy issues appear even where we may not think to look for them, like in our favorite movies. For this Health Literacy Month, we challenged readers to notice and consider how health literacy is depicted in their favorite entertainment media.

Why health literacy at the movies?

Films are a great way to engage with health literacy because of the emotional connections created through storytelling. The empathy we feel for characters allows us to engage with health literacy issues more deeply. The separation of the screen provides us with a safe environment to experience health literacy issues along with the characters, while also giving us the opportunity to step back and look at the big picture.

What is health literacy?

It’s important to remember that health literacy has two dimensions: personal and organizational.

Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

Organizational health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.  

In this infographic, we used movies to offer a bird’s-eye view of the intersection between personal and organizational health literacy in the lives of characters onscreen. This infographic focuses on a few key concepts related to health literacy: decision making, organizational health literacy, and health equity. Each of these concepts is the focus of a different part of the exercise, chosen to encourage health professionals to think about health literacy as a shared responsibility between individuals and organizations.

Let’s start the show!

For this exercise, readers are asked to pick a health literacy issue faced by a character in any movie , whether it is part of the main plot or a small moment. We encourage the audience to engage with health literacy through the entertainment that is interesting to them, whether that means identifying an issue faced by an action hero, sitcom character, or dramatic lead. We designed this exercise to work for any situation, from a character’s cancer treatment to an accidental injury or misuse of medication.

In the first part of this exercise, we highlighted the ability to use information and services to make health-related decisions. Conversations about health literacy often focus on readability and understanding, but the ability to use information and services to make decisions is just as important.

The second part of this exercise asks readers to think about whether the narrative they’ve chosen acknowledges the impact of both personal and organizational health literacy. It was especially important to spotlight organizational health literacy for industry professionals, to get them thinking about the many different stakeholders that play a part in improving personal health literacy for individuals.

In the third part of this exercise, we highlighted health equity and the social determinants of health. The concept of health equity is necessary for understanding the intersection between personal and organizational health literacy. In order for organizations to facilitate personal health literacy, there must be acknowledgement and understanding of varying needs and barriers across different communities. Efforts to improve health literacy are not benefitted by a one-size-fits-all approach but rather by strategies that improve access and opportunities to those who need it most.

Adding some movie magic

The Health Literacy team at CISCRP enjoyed thinking creatively about how to engage a professional audience in this health literacy exercise. One of the most enjoyable parts of the development process was incorporating movie theater imagery into the visual design to draw the audience in. We particularly enjoyed the creation of a health literacy superhero and the visual pun evoking 3D movie glasses that we used to introduce the two dimensions of health literacy. These elements are not just about having fun, but also about organizing content into digestible chunks, an important step for supporting health literacy.

Here’s a word from the Senior Director of the pharmaceutical company with their thoughts on Health Literacy at the Movies:

We were delighted to work with CISCRP to create materials for Health Literacy Month. We partnered with CISCRP because of their expertise in health literacy education, their creative approach, and their experience in tailoring materials to specific audiences. Our pharma company is dedicated to supporting health literacy education and awareness throughout our organization, and we look forward to continuing this partnership with future educational materials.

At CISCRP, it is always our goal to create materials that encourage education. We designed this health literacy refresher to get health professionals to think about health literacy in new ways, both by encouraging them to notice the influences of health literacy all around them and to think about the intersection of personal and organizational health literacy. In this way, the next time they’re at the movies or even catching up on their favorite show, they might think about their organization’s role in health literacy, health equity, and individuals’ agency—not only that of their favorite characters, but of people in our world, too.

Written by: Nina Treese