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.

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.

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

Voices Yet to Be Heard: Including People with Disabilities in Clinical Research

By its very nature, clinical research must align with diversity, equity, and inclusion for it to be fair and representative. But the inclusion of people living with visible and invisible disabilities in clinical trials is often not the focus of the DEI discussion. Voices Yet to Be Heard: Including People with Disabilities in Clinical Research is a conversational webinar featuring a powerful panel of experts and advocates. Our panelists share their experiences participating in clinical research, accessibility challenges they have faced, and suggestions for systemic improvements.

Meet the Panelists

Pam Cusick | Moderator
Senior Vice President, Rare Patient Voice
Pam Cusick is an experienced research professional with more than 30 years of expertise in study design, implementation, and analysis. Her background in public health communications and research, coupled with her passion for patient advocacy, dovetail with Rare Patient Voice’s mission and vision. Pam hopes to expand Rare Patient Voice’s panels to include all patients and caregivers worldwide who want to share their opinions and impact their disease category. Pam earned a BA in Psychology from Sweet Briar College, and a MA in Psychology from the New School for Social Research. She is Past-President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation. As Senior Vice President, Pam’s focus is on the continued growth and success of RPV, with an eye on client services, business development, and oversight of patient outreach, panel management, and marketing.

Richie Kahn | Panelist
Co-Founder & Principal at Canary Advisors
Richie is a health policy professional by training, clinical researcher by trade, and patient advocate by necessity. A rare disease patient and clinical trial participant himself, Richie is intensely passionate about better incorporating the patient perspective into the clinical development process. Through his work at Canary Advisors, he assists organizations set on patient-focused drug and device development by serving as an early-stage patient advocacy function; supporting regulatory patient advocacy; crafting patient-facing market access and reimbursement strategies; and providing clinical trial support services.

Sabina Kineen | Panelist
Rare Disease Patient, Caregiver, and Advocate

Sabina Kineen is a rare disease patient, caregiver, and advocate with a deep passion for health equity, mental health, and patient engagement. Diagnosed with Fabry Disease in her teens, Sabina has spent numerous years advocating for the rare disease community. She is a vocal advocate for mental health, recognizing the critical importance of addressing the psychological impact of living with a rare disease. Sabina is also a strong proponent of health equity and strives to ensure that every patient has access to the care, including clinical trials, they need and deserve.

Sabina’s twelve years of experience as a clinical trial participant gives her a unique perspective and she believes in the power of patient engagement. She recognizes that patients are experts in their own experiences and should have a seat at the table in decisions that affect their care and drug development. 

Sabina has spoken at numerous conferences, served on Patient Advisory boards, serves as a Fabry Champion and Community Ambassador, sharing her story as a patient and caregiver and advocating for the needs of the rare disease community. Through her advocacy work, Sabina aims to raise awareness, promote understanding, and create meaningful change for rare disease patients and their families.

Ash Rishi | Panelist
Founder and Chair of the Board of Trustees, Demand Diversity 

Ash Rishi is a health equity advocate and a leader in patient and community engagement and has been working to improve strategies globally while founding and running the creative health engagement agency, COUCH Health.

Building on his personal ambitions, Ash founded Demand Diversity, initially as a campaign for change, to raise awareness around representation of patients in clinical research. The work Demand Diversity has done over the past few years has led to Ash setting up Demand Diversity as a non-profit initiative to educate and raise awareness of clinical research within under-served populations – with particular focus on improving trust.

Ash’s overall ambition is to make research more equitable, so all communities benefit from the advancement from medicine.

Medical Hero Spotlight: Ella Balasa, Cystic Fibrosis Advocate & Patient Engagement Consultant

Growing Up with Cystic Fibrosis

Ella Balasa was diagnosed with cystic fibrosis (CF) at only 18 months old, after suffering from constant sinus infections, upper respiratory infections, and a bout of pneumonia. One of three siblings, Ella jokes she won the ‘genetic lottery’, since she is the only one with CF in her family. Despite this, Ella had a relatively normal childhood.

“I spent a lot of time in the hospital being treated for lung infections when I was growing up,” Ella recalls. “My daily treatments and medical care made me feel different from the other kids my age, which was difficult.” Cystic fibrosis affects not only the lungs, but also the pancreas’s production of enzymes, which are needed for digestion. While in school, Ella would visit the nurse’s office daily before lunch to take her enzyme pills before eating.

In college, Ella chose to study biology and ended up working in a laboratory after graduation.

“It was in this role that I first realized my own experiences as a patient could help bridge the gap between research and patient communities,” Ella says.

At the time, her team was studying antibiotic resistance, something Ella had personally dealt with in her own medical journey. “I’ve had to use antibiotics frequently to treat lung infections, which over time means that my body has developed a resistance to them. There have been points in my life where treatments wouldn’t work for me because of this. It was interesting having this connection between my own life and the research we were working on,” Ella recalls.

Amplifying the Patient Voice in Research

Inspired by this connection, Ella started volunteering with the Cystic Fibrosis Foundation and joined several advisory committees. She was able to use her degree and experience to review study protocols and provide input about what the priorities and needs of patients are when developing new research studies.


It was through this early work with the Cystic Fibrosis Foundation and other groups that Ella began developing a more professional patient voice. Her connections led her to start working with larger industry groups to help develop patient-friendly communications about upcoming clinical trials and new treatments. Since 2020, Ella has committed herself to working full-time as a patient engagement consultant.

“My goal is to lend the patient voice into developing better treatments and services,” Ella says.

Since then, Ella has grown her industry connections by speaking on panels, at conferences, and by attending other events. She began branching beyond CF consultation, ensuring the patient perspective is represented within research for other rare diseases. Now, Ella works with industry professionals to identify and meet the needs of many different patient communities.

Phage Therapy & Clinical Research

Around the time she began getting involved in advocacy, Ella was invited to be a part of a documentary about CF where she met another patient who was receiving an experimental treatment called Phage therapy. “This was an alternative to the antibiotics I had become resistant to, so I was very interested in trying it,” Ella recalls. The next day, she contacted the research team at Yale directly and was approved to begin the medication.


The treatment was incredibly successful for Ella, which inspired her to write an article for Huffington Post about her personal experience with CF, antibiotic resistance, and seeking alternative treatments. “I was really excited to bring more exposure to the topic of antibiotic resistance because it is common for people with chronic conditions and isn’t talked about often,” Ella says.


Since her treatment in 2019, there has been a lot of advancement in the field of PHAGE therapy, with clinical trials now available and more research being explored.

Ella is a proponent of clinical trials, explaining, “The best way to bring new treatments to communities is by participating in the necessary research. As a patient, it’s a commitment that needs to be decided carefully, but if you do choose to participate, you become a piece of the larger puzzle that leads to new medications, therapies, and even cures. Patients can and should be involved in the decision-making process and outcomes of new treatments.”

Unfortunately, Ella is not eligible for most CF clinical trials because her lung function is below 40%, one of the most common general exclusion criteria used in research. “I believe it’s important to develop adaptive trial endpoints and protocol designs to make clinical research more inclusive to a broader population of patients,” Ella says. “Everyone wants new treatments, but the eligibility criteria often exclude the patients who need new treatments the most.”

Connecting Patients & Industry
“Empathy must be the root of all healthcare interactions. For there to be meaningful communication between larger pharmaceutical companies and the patients they are serving, there needs to be a desire to understand the needs of patients and the barriers they may be facing in their daily lives. Real patient care happens along the way, when industry provides support and interest in patients outside of their experiences taking a new medication,” Ella says.

A large part of Ella’s role as a patient engagement consultant is making sure patients are brought into the conversation early on, beginning with trial protocol development, all the way to the post-study dissemination of information.

“I view healthcare as a loop. As patients, we are one group that contributes to improving healthcare, but it can’t be done without the physicians and researchers, and industry organizations. They are our partners in advancing treatments,” Ella shares.
Advice For Aspiring Advocates

One of the most rewarding parts of Ella’s work has been the relationships she has been able to foster with other advocates. “I’ve seen the work that others are doing, and it inspires me to get even more involved,” Ella says. “The drive and passion that stems from all these individuals is amazing.”


If you’re interested in getting more involved within a patient community or becoming an advocate, Ella advises to start by sharing your story. “When you’re not afraid to share your story and ask questions, doors will open for you. Don’t be afraid to reach out and make those connections. I’ve reached out online to many organizations to share my ideas and volunteer for opportunities, and I’m so glad that I have.”

Additional Resources:

www.cff.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

How to Find a Clinical Trial

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 how to find clinical trials that are a good fit for you. 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.

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. The alternative text and accessibility features in this brochure were added after IRB review.

Topics Include:

  • What Clinical Trials are
  • How to Start Looking for Clinical Trials
  • Where to Look for Clinical Trials
  • What to Expect When Contacting Trial Staff

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

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 Uwho 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