Results from CISCRP’s 2023 Perception & Insights Study

CISCRP’s Perceptions & Insights Study routinely assesses global trends in attitudes, perceptions, and experiences associated with clinical research among patients and the public. The results from our latest 2023 study are in, with over 12,000 responses from around the world! We discuss the latest findings from this study during the webinar.

Featured Speakers

Annick de Bruin

Chief Research and Insights Officer, Research Services, CISCRP

Rebecca Nordland

Senior Project Manager, Research Services, CISCRP

headshot_Emily Clifford

Emily Clifford

Senior Project Manager, Research Services, CISCRP

Jackie Zimmermann MS Advocate

Jackie Zimmerman

MS & IBD Patient Leader

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Twyla Bode RN BSN MN

Clinical Research Nurse Coordinator

Highlights From the 2023 Study Include:

  • Public understanding of clinical research and perceptions of safety increased post-pandemic
  • Top mentions for increasing trust in pharma companies conducting trials:
    • By the company sharing information about the health risks and benefits of their medicines
    • Knowing that the company actively works with patients, caregivers, and patient communities to make clinical research studies easier to participate in
    • By the company sharing information in patient-friendly language that they can easily understand
  • About half were ‘very willing’ to go to a pharmacy for study visits, however those who were not willing were most concerned:
    • About the facilities (i.e., too public, lack of a private room/area)
    • That their privacy/confidentiality would not be protected, and
    • About the quality of care they would receive

Insights on Developing an Impactful DEI Video

Hear from our panelists who share insights gained while developing CISCRP’s video, The Importance of Diversity in Clinical Trials. The discussion will focus on how to embed key DEI principles and concepts, not only in the product but also in the process, ensuring a balance is struck between nonpromotional education and advocating for participation, logistical tips for planning and executing a successful live-action video project.

Featured Speakers

Lucas Goren

Senior Project Manager, CISCRP

Behtash Bahador

Director, Health Literacy, CISCRP

Tammy Wilkins

Tammy Wilkins

Senior Manager, Applied Innovation and Process Improvement, Otsuka

matt-low

Matt Low

Chief Creative Officer, Praxis Communications

Mel Hardman

Dr. Melissa Hardman, MPH, MS

Faces of Research

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Ashley Nealy

COVID-19 Clinical Trial Participant

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Melvin Mann

Video Participant

Medical Hero Spotlight: Brittany Foster, Pulmonary Hypertension Patient Advocate

Living with Pulmonary Hypertension

Brittany Foster may not appear to be struggling with a chronic condition upon first impression, however, she has been navigating a series of complex medical diagnoses for decades. At birth, doctors discovered Britt had a blockage in her intestines. She was rushed into emergency surgery, where it was quickly discovered she had also been born with a heart defect when she went into sudden cardiac arrest. At less than a year old, Britt was taking medication for heart failure and had a procedure to repair the hole in the bottom of her heart, called a ventricular septal defect. Soon after, she was diagnosed with pulmonary hypertension, a condition that forces her heart to work overtime to pump blood to her lungs.

Despite this diagnosis early on, Britt enjoyed a relatively normal childhood. She was very active, participating in nearly every sport with no issues. For years, the only evidence of her condition were the scars from her surgery as an infant.

Unfortunately, around the age of thirteen, Britt found herself struggling with shortness of breath while playing sports. Her cardiologist recommended she take a pulmonary function test, believing the symptom to be exercise-induced asthma. She was given inhalers and continued with daily life but soon found the inhalers weren’t fully effective.

“At that age, all I wanted to do was what my friends were doing. I loved playing sports, so I kept at it, despite my continued breathing difficulties,” Britt says.

Upon graduation, Britt began a career path in education as a teacher, a role that exemplified her passion for advocacy and helping others. “I wanted to advocate for the students who need resources, or who in some cases, did not have the ability to speak up for themselves,” Britt says. Four years into her career, Britt was managing an eighth-grade classroom when her condition began to impact her daily life again. “Many people don’t realize what a physically demanding job teaching is,” Britt reflects. “I was on my feet all day walking around the classroom and bending and crouching very often. One day I got incredibly lightheaded and ended up passing out in the classroom.”

Changing Directions: From Teaching to Rare Disease Advocacy
“Unfortunately, a big part of my story has been repeated mistreatment from medical professionals. As a young woman who physically appeared to be in good health, assumptions were made about me by doctors who weren’t interested in my prior history or symptoms,” Britt says.

After being rushed to the ER from her classroom, Britt’s doctors concluded she fainted due to dehydration despite her history of heart disease. They planned to send her home to rest with fluids, but Britt knew something else was wrong.

“I was lucky that right before being discharged, a nurse started asking more probing questions about what I had been doing right before fainting. We decided I should walk down the hallway with a heart monitor and oxygen sensor to evaluate,” Britt recalls. Within minutes, Britt’s oxygen levels had dropped rapidly, and doctors finally decided to admit her into the cardiac unit for further treatment.

Britt was released later from the hospital with an oxygen tank to assist her breathing and was told to adapt her life around her pulmonary hypertension. “I was only twenty-six years old,” Britt says. “The tanks were huge and difficult to get around with. I wasn’t given any resources on how to adapt my life, but I knew I wanted to get back into my classroom and start teaching again.”

Britt went back to teaching for several months and finished the school year but struggled with her oxygen tank throughout. Over the summer, she met with her doctors who strongly advised her to change career paths. Britt made the hardest decision of her life to retire from teaching. “I felt incredibly discouraged and depressed watching other teachers move on with a new school year, while I was sick in bed,” Britt recalls.

Finding Community & Support

During this time, Britt struggled with depression and anxiety. She turned to writing as an outlet, sharing her experience on social media, and eventually going on to write for a nonprofit organization that promotes mental health awareness. Soon after, she was hired as a columnist for BioNews to write about pulmonary hypertension. “From there I was able to start connecting with other patients, caregivers, and medical professionals, which helped build the sense of community and purpose that I had been missing,” Britt says.


In the years since, Britt most recently worked on the People & Culture team, a position that she loved. “I am grateful that BioNews truly values employees’ health and makes sure to accommodate our needs.”


Throughout her medical journey, Britt says her friends and family have been her biggest supporters. She encourages others with rare diseases to not be afraid to speak up about their experiences.

Continued Medical Treatement

Since her initial diagnosis, Britt has continued to undergo medical treatment, as doctors began to better understand her condition. At age twenty-nine, it was discovered the Britt was born with an anatomically misplaced aorta, in addition to the hole in her heart.

“My aorta branches off to the right, so all my arteries are opposite. I was in the hospital, sick and unable to keep food down. Doctors were trying to diagnose me with bulimia, until a GI specialist stepped in and found that because of my aorta, my arteries had formed a tight branch around my esophagus, making it painful to eat or drink,” Britt says.

Because of the long-term compression on her trachea and esophagus, Britt needed surgery to repair the damage. Unfortunately, this condition has caused permanent nerve damage, gastroparesis, and esophageal dysphasia. Since her surgery, Britt has become feeding-tube dependent to ensure she has adequate nutrition.

Advice for Patients

As someone who has navigated the healthcare system with a rare condition, Britt has learned valuable lessons along the way that she shares with others whenever she can.

Find a medical professional you can trust to advocate for your care.

“Rebuilding trust in medical professionals has been a challenge for me, but finding trusted doctors I can rely on has been a big help. I have an excellent relationship with my primary physician who leads my care and truly advocates for me,” Britt says.

Create a medical overview binder to share in emergencies and with new doctors.

Emergency rooms are fast paced and fast moving. When admitted, you may end up speaking with multiple doctors who haven’t spoken directly with each other about your condition. Britt recommends having one provider you trust assist you in building a document that includes all your medical diagnoses with explanations, any medications, or treatments you are currently taking, and the contact information and signature of that doctor. “I bring this folder any time I have to visit the ER and have the file stored on my phone to show staff as well,” Britt says. These documents can be helpful for treatment so that new doctors are aware of your baseline levels and other conditions.

Surround yourself with people who understand your condition and who support you.

“My medical condition has made my life and daily routine very inconsistent,” Britt says. “I never know when something will come up and I’ll need to cancel plans. Socializing takes a lot more planning now, which can be difficult.” If someone in your life is living with a chronic condition or a rare disease, Britt recommends becoming educated about their condition and learning to adjust expectations when it comes to socializing and other daily commitments.

Trust the timing of your life.

“Six years ago, I thought I had no future and I had lost a career I was passionate about because of my rare disease. Today, I have a supportive community of people who understand my experience and for that I am grateful.”

Additional Resources:

https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-hypertension

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

Clinical Research for American Indian and Alaskan Native Communities

CISCRP is committed to providing clear, unbiased, and culturally appropriate educational materials to engage and inform communities that have not been well represented in clinical trials.

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We developed this brochure together with members of American Indian and Alaskan Native communities, as well as subject matter experts who have experience working with these communities. This included receiving feedback from 500 members of the American Indian and Alaskan Native community through an anonymous survey.

They all helped make sure the topics, language, images, and design are appropriate and engaging. We also received feedback on how effective our brochure was for raising awareness about the importance of American Indian and Alaskan Native participation in clinical research.

This process allowed us to confirm that we are addressing the key concerns and barriers that prevent better diversity, equity, and inclusion in clinical research. 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:

  • Why are Clinical Trials Important?
  • The Need for Diverse Participants in Clinical Trials
  • Why Have American Indian and Alaskan Natives Not Been Represented in Clinical Trials?
  • How American Indian and Alaskan Native Participants are Protected
  • Things to Consider Before Volunteering
  • Different Ways to Get Involved

Medical Hero Spotlight: Katie Hill, Appendix Cancer Clinical Trial Participant

Diagnosed with Appendix Cancer

Like most patients diagnosed with appendix cancer, Katie Hill had no idea her body was battling a deadly disease. Her diagnosis story began in 2021, when she made the decision to undergo a partial hysterectomy after struggling for years with pain caused by fibroids. At the hospital, her care team provided her with consent forms to read through and sign off on before the procedure. These forms gave her doctors permission to make other decisions as medically necessary if needed, a standard practice during surgeries.

“Because of COVID-19, I went in for the procedure by myself, and when I woke up in my recovery room, my surgeon let me know that there was an unexpected discovery they had made while I was under,” Katie recalls.
Her doctors had noticed an unusual spot on her appendix and decided to remove it just to be safe. Katie was informed that the team had also found some excess tissue near the appendix and abdomen, which they thought might be from endometriosis. With her appendix and tissue sent to the pathology department for testing, Katie was released from the hospital to recover at home.

Two days later, Katie noticed an email from her patient portal about her test results.

“Assuming it was nothing, I opened the email and started reading the pathology report from testing my appendix and tissue,” Katie says. “It was from that email that I learned I had Stage 4 metastatic mucinous adenocarcinoma of the appendix.”
“I remember sitting in my living room in complete shock. I didn’t know what else to do but to start Googling my cancer. It felt like a lifetime, but it was only about 5 minutes of reading before my surgeon called, interrupting my research. I could tell immediately by his voice that there hadn’t been a mistake, that this was real. Before he could say anything, I cut him off and said, ‘I know.’”

That afternoon, her surgeon had been desperately trying to prevent the hospital’s patient portal system from releasing the pathology report to Katie so that she would not learn of her diagnosis in such a clinical and shocking way. On their phone call, Katie learned a team at the hospital had been in discussions all day about her rare cancer and were researching treatment options for her.

Finding a Treatment Plan

Some patients might pull back from researching their cancer, but Katie jokes that research has always been a part of her DNA. “I needed to understand everything I could about my cancer.” 

She started by finding online resources and support, through groups like the Appendix Cancer Pseudomyxoma Peritonei Research Foundation (ACPMP), and patient support groups on Facebook. On patient forums, Katie quickly learned that it is critical for appendix cancer patients to select a specialist at a high-volume cancer center, or someone who has treated hundreds of patients with this disease.

“It used to be said that the chances of getting appendix cancer was 1 in a million. Now it’s about 2.5 in a million, so there are still not many doctors who have a lot of experience treating it,” Katie shares.

Katie spent the next week going to consultations in her home state of Pennsylvania and traveling to several appointments in New York. Within 2 weeks, she had selected her cancer specialist at Memorial Sloane Kettering.

“Part of my selection process for a specialist included finding a high-volume cancer center. I wanted a surgeon who has seen at least 100 or more cases of this a year, and I was also interested in finding a cancer center that had clinical trials available,” Katie explains. “If I have a rare cancer and have the opportunity to participate in studies that further care for other patients, I feel a duty to help.” 

Katie began treatment with chemotherapy to shrink her tumors. Her next step involved a procedure called cytoreductive surgery (CRS), which involves scraping the cancer off and, in some instances, removing organs. 

“My cancer is unique because it’s not a solid tumor, which is how most people visualize cancer. My cancer is like a jelly that spreads out across my insides, making it hard to detect on scans and then to remove.”

Joining a Clinical Trial

For Katie, clinical trial participation was a major consideration in her treatment plan, and she was fortunate to qualify for the ICARuS study. “It’s standard practice for most surgeons to use a heated chemotherapy agent as a wash to kill cancer cells. The ICARuS study is a randomized trial comparing two different methods of administering chemotherapy,” Katie explains. The purpose of the trial is to determine if outcomes for patients are different when using different types of chemotherapy.

As a rare disease patient, Katie has also had the opportunity to enroll in an observational study, called the Genetics of Appendix Cancer, or GAP study. “Right now, many appendix cancer patients use the same treatments as colon cancer patients because there is very little awareness or funding for research for this disease,” Katie explains.

“Many surgeons who run into this disease have never seen it outside of medical textbooks and oftentimes will misdiagnose or begin treatment, which could be detrimental to patients. They assume they’re doing good, but don’t realize that this is a different disease that needs to be treated differently.”

Appendix cancer was previously not considered curable, but we now know that some patients are making it for long periods of time with no evidence of disease (NED). Katie is currently 18 months NED! She hopes to be one of the patients who goes for a long time with NED but shares that she will be happy to get a couple of years without recurrence. “Our industry is moving so quickly that there will be new treatment options waiting for me down the line, which I am thankful for.”

Katie the day she arrived home after surgery, completing her treatment journey.

A Career Rooted in Life Science Collaboration

Katie has spent the last 20 years of her career working in different roles at the Drug Information Association (DIA), an organization dedicated to improving outcomes for patients through industry collaboration. Most recently, as Senior Vice President and Managing Director of Learning and Digital Solutions, Katie oversaw the development of DIA’s Patient Engagement eLearning Program, which helps to train professionals on best practices for integrating the patient perspective into the full medicines lifecycle. 

Unlike others fighting cancer, Katie wasn’t hesitant about sharing her diagnosis with her colleagues who were all incredibly supportive during her treatment. “My diagnosis was just another affirmation that the work we do at DIA is important. My colleagues and I come to work every day because of patients like me living with diseases, waiting for breakthrough treatments,” Katie shares.

For others navigating a difficult diagnosis for themselves or a loved one, Katie emphasizes that there is no ‘right’ way to move through your medical journey. “Everyone has different experiences and setbacks when dealing with a disease. I tried to maintain a positive attitude throughout my treatment, but that might not work for everyone,” Katie explains.

To newly diagnosed patients, Katie compares their upcoming medical journey to riding a rollercoaster.

“Everyone who has been on a rollercoaster knows that the scariest part is the slow climb to the top. In healthcare, most patients experience this immediately after their diagnosis, when there is so much uncertainty, fear, and often waiting. Once you’ve established a plan and found your care team, your treatment begins, and things really speed up. I know that for me, it was scary, but I felt secure knowing I had a top-notch medical team by my side and that I was making progress,” Katie says.

Additional Resources:

https://acpmp.org/ 

View an overview of the ICARuS study here.

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

Eligibility Criteria for Clinical Trials

Are you, or someone you know, considering joining a clinical trial? We developed this infographic to serve as a resource to better understand eligibility criteria for clinical trials.

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

Download Infographic Here

Working Towards a More Inclusive Environment: Transgender & Non-Binary Participants in Clinical Research

Trans and non-binary people face significant barriers to participation in clinical trials. To transform lives and collect the best evidence, we need to fully understand and work together to solve these challenges, by creating more diverse and inclusive clinical trials. This talk features two speakers from these communities who will provide insights, both for attendees that are new to this topic and for those who already have started learning. This webinar was organized and hosted by CISCRP for Clario.

View Article Overview of the Webinar Here

Featured Speakers

Jae Bailey
(They/Them/Their(s))

Liam Paschall
(He/Him/His)

Medical Hero Spotlight: Scott Germain, PTSD Patient Advocate

Retiring from Military Service

Today, Scott Germain works at the United States Army Natick Soldier Systems Center as a government employee, a change of pace from his previous career in the Army as a sergeant major. Scott served for 25 years in the U.S. Military, including time spent as a member of a Special Missions Unit and as a Green Beret. Throughout the 1990s and early 2000s, Scott was deployed to many areas of conflict, including Bosnia, Haiti, Rwanda, Afghanistan, and Iraq.

In 2012, Scott officially retired from the Army and was evaluated by a Special Missions Unit psychologist before leaving. “I think the Army’s standards of disability are different,” Scott says.

Scott during his military service

“I was evaluated as only having anxiety from leaving. The psychologist saw my team very frequently while I was deployed, so underlying issues weren’t as apparent to her in the environment we were all living in.”

Scott’s wife Jeannine has worked for many years in her own career to support veterans and military families. She is currently a project manager at Project New Hope, an organization dedicated to providing services and programs to support veterans and their families. After Scott left the Army, Jeannine saw many common signs of Post Traumatic Stress Disorder (PTSD) in her husband, despite a lack of diagnosis from his doctors. 

Scott was eventually tested, and his disability rating given by the military skyrocketed to 100%. “Scott was shocked when doctors concluded his PTSD was moderate to severe,” Jeannine recalls. “Since he retired from the Army, I sensed he was struggling, but he didn’t recognize the signs in himself. The testing was very helpful for us.”

Beyond PTSD, Scott suffered multiple physical injuries in his career for which he was prescribed pain medications. After leaving the military, Scott joined a three-week program at the Mayo Clinic to be weaned off these pain prescriptions alongside other people who struggled with chronic pain and addiction. “My experience with pain medication was different from many others in that group,” Scott says. For many people living with chronic pain from diseases or injuries, simple tasks like getting out of bed can be a challenge. Scott had been deployed and working while coping with the pain from his injuries, so his biggest challenge was now learning to not depend on the drugs in his daily life and be comfortable with a certain threshold of pain.

Finding Treatment

After the Mayo Clinic, Scott and Jeannine began looking for resources to help treat his PTSD. They began at Home Base in Boston, a nonprofit that provides mental health counseling, physical therapy, and other resources for veterans. Scott met with a team of doctors there who discovered that during his career, Scott had experienced a Traumatic Brain Injury (TBI) with lingering symptoms that continued to impact his health. “There are many ways a TBI can manifest, but for me, I struggle with memory loss, balance issues, severe migraines, mood swings, and sleeplessness. My body had adjusted to some of these problems over time, so I wasn’t even aware I was compensating,” Scott says.


For the remainder of his time at Home Base, Scott attended the program with a large group of veterans in the area. The treatment involved a lot of group therapy with veterans who had wide ranging experiences. Scott found himself struggling to connect with others in the program who served for several years, not several decades like he had.

“To help reassure many of us living with PTSD, our doctors would try to reinforce the message that the world is a safe place, and we didn’t need to be hypervigilant, but that just didn’t resonate with me,” Scott reflects. “Even back home in the US, there are daily mass shootings in public spaces we go to everyday. It felt hypocritical to say everything is okay to a group of people who know from lived experience that it is not.”

A couple of years after finishing the Home Base program, Jeannine stumbled across a recommendation for The Marcus Institute for Brain Health, a program through the University of Colorado that specializes in treatment for traumatic brain injuries. Scott applied and was accepted for the three-week inpatient program. The process involved a lot of physical therapy to help treat injuries as well as build up Scott’s balance and motor skills, which were impaired from his TBI. The group also did activities like yoga, art therapy, and memory exercises. The treatment was very successful for Scott, who enjoyed the program and the specialized care he received. “I appreciated that the doctors didn’t treat us all the same. I was in a very small class of 3 people, but our cases and experiences were all handled differently, and plans were made specific to each patient,” Scott says.

Advocacy Work & Advice

Throughout Scott’s treatment for his PTSD and TBI, there have been many roadblocks and barriers that have made receiving treatment harder. Scott has had negative experiences with doctors who have spoken down to him and minimized his experiences. There have also been many instances where getting appointments has been a struggle. “The VA and many other treatment centers are only open during office hours. If you need help from them or want to go to a group session, it has to be during the workday. For me that’s unrealistic since I still work a full-time job,” Scott says. Another current issue facing the military community is the overall shortage of available doctors and therapists. “Many military spouses and family members need healthcare services and there are no available appointments,” Jeannine says.


Scott’s years of experience navigating the healthcare system have made him a strong advocate among the veteran community for those living with PTSD. “When I was serving, I didn’t know anything about PTSD or TBIs,” Scott recalls. “Having that knowledge ahead of time is incredibly helpful and could save someone a lot of time and struggle.”


Scott and Jeannine’s greatest piece of advice for someone living with PTSD is to become educated and to encourage their family and friends to learn more about the disease as well. Jeannine recalls spending a lot of time early on when Scott first joined the Army educating herself about PTSD so she could provide support and so their family could adapt their lives as needed. Having the understanding and support from spouses of military members and other loved ones is critical.


Scott would also advise anyone struggling with PTSD or with a mental health condition to consult with their doctors to find small changes that can benefit them. For Scott, drinking in moderation and driving during off-hours of traffic are small alterations that made a big difference in keeping him safe.

“Ultimately, when it comes to medication and treatment options, everyone should be their own advocate,” Scott says. “Make sure you ask any questions you have to your doctors before starting a new treatment and that you feel comfortable with the care you are receiving.”

Additional Resources:

https://www.clearpathne.org/

https://www.projectnewhopema.org/

https://medschool.cuanschutz.edu/mibh

https://homebase.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