Resources Archives

The Clinical Trial Challenge: Boosting Clinical Trial Appeal in Patient Communities – Part 1

Part 1 of 2 Part Series

Clinical research is critical to progress towards new treatments and cures for all diseases. But engaging patients in clinical trial participation is often an uphill battle. Hear from Rare Patient Voice Senior Vice President Pam Cusick and patient advocate Grace Charrier about the results of a new RPV survey exploring factors that could make participation of greater interest to patients and family caregivers.

Pam Cusick | Panelist
Senior Vice President, Rare Patient Voice

Grace Charrier | Panelist
Host, Cancer Convos with Grace B., and Cancer Advocate

To view the second part in this webinar series, click here.

Voices from Within: Humanizing Clinical Research Data: Episode 2- Conversations on DCTs: Data Privacy

3 PART FLASH WEBINAR SERIES

Join in on the growing topic of patient data protection and policies. In a time when healthcare has adopted technology and data collection software at an exponential rate, it is important to educate patients and stakeholders on what that standard for patient data collection should be.

Join Curebase’s Vice President of Clinical Trial Innovation, Jane Myles, Vice President of Clinical Operations, Sean Lynch, and Type 1 Diabetes Clinical Trial Participant, Phyllis Kaplan for Episode Two of our Voices from Within: Humanizing Clinical Research Data series.

View the webinar below.

Watch Webinar Episodes 1 & 3

Voices From Within: Humanizing Clinical Research Data:
Episode 1 – Patient Data Collection 101 Flash Webinar
Watch Here

Voices from Within: Humanizing Clinical Research Data:
Episode 3 – Conversations on Clinical Trials
Watch Here

Panelists:

Jane Myles
VP, Clinical Trial Innovation, Curebase

Phyllis Kaplan
Type 1 Diabetes Clinical Trial Participant

Sean Lynch
VP of Clinical Operations, Curebase

Medical Hero Spotlight: Nia Grant, Type 1 Diabetes Clinical Trial Participant

Type 1 Diabetes Diagnosis

In 2007, Nia Grant was a senior at Spelman College, anxiously awaiting spring break so she could go on a trip to visit family in Florida. In the weeks leading up to the trip, Nia found herself struggling to sleep through the night and making frequent bathroom trips, which she attributed to the stress of midterms season as a college student.

On the 6-hour drive to Orlando, Nia’s symptoms only increased. “The longer we were in Florida, the worse I felt. We visited Disney, and I had to go to the bathroom constantly,” Nia recalls. It was in the middle of the night when Nia became nauseous and sick, and she and her family began to worry. The next morning, Nia’s sister drove her to the Emergency Room to be checked. “The nurse handed me a clipboard with intake forms to fill out and it was then that I realized I couldn’t see well enough to read the page,” Nia notes.

Assuming she had perhaps contracted food poisoning or another virus, Nia was tested and awaited results with her sister and friends. Eventually, Nia’s doctor visited her room and asked, “How long have you been diabetic?”

“That’s how I found out I had Type 1 Diabetes,” Nia explains. “I was so shocked. I called my mom on the phone and had the doctor tell her my diagnosis because I knew she wouldn’t believe me. She flew down to Orlando the next day.”

Nia remained in the ICU for a week recovering. There, she learned how to use insulin by first practicing on an orange before trying her own body. When she was released, she flew back to Atlanta to finish her senior year and began the journey of living with diabetes.

Finding Treatment

While the standard treatment for Type 1 Diabetes (T1D) is insulin, this is only one aspect of how Nia manages her condition. Food, exercise, and lifestyle choices are also important components that people living with Type 1 Diabetes must consider. “I’m lucky that I have such a strong support system and people in my life who have educated themselves about diabetes or who have it themselves. When I say, ‘I’m low’, I don’t have to explain to my friends what that means, which is nice,” Nia reflects. As with many chronic conditions, there are no days off from T1D and individuals living with the disease must be vigilant and make important choices to maintain their health. “I think it’s critical to remember the people behind the disease,” Nia advises. When Nia was first diagnosed, she sought out resources and support online, looking to existing diabetes advocacy and support groups. There, she made close friends and found a community that understood her condition and offered support and advice.

Getting Involved in Clinical Trials

Nia has been in several clinical trials, the first for an insulin pump four years ago. “I love clinical trials,” Nia gushed. “They are an opportunity for the average person to be involved in complex medicine.” Nia is a proponent of participating in clinical trials because of the need for diverse representation in these studies.

“A lot of times in clinical trials, you don’t see people who look like me. There’s a well-documented history of mistreatment of African American people in medicine. I am female, brown, and queer. My participation in trials helps to make the process more transparent and creates more representation for my community,” Nia explains.

Nia shares the important reminder that the more diversity in a trial, the better data can be collected and the better chance for treatments to be developed that are effective for all communities.

Although there are many important reasons Nia recommends participating in a clinical trial, she also acknowledges some of the barriers that can make participating difficult. “I live in Baltimore with a lot of great research institutions but was assigned to a hospital site in Virginia, 3 hours away from me. If a trial requires you to have visits in-person, that can take an entire day of driving and requires transportation, time off work, and in some cases childcare,” Nia notes. Another barrier for African Americans and other members of minority communities is the lingering fear and mistrust that still exists from past medical mistreatments. Nia admits that this fear still lingered in the back of her mind, but she pushed herself to take the step to participate and is glad she did. “It’s important to know that if you’re thinking about joining a trial, you have the right to ask as many questions as you’d like, in fact it’s encouraged. Clinical trial care teams want you to understand the process and make an informed decision,” Nia explains.

For anyone considering participating in a clinical trial, Nia advises, “Do it! I know that participating can sound scary or overwhelming, but this is your chance to contribute to science. The more data researchers have, the better data it is for the development of treatments and cures for you and members of your community. How cool is that?”

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.

Volunteer opportunities with CISCRP, visit our Volunteer page

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

Wondering How to Take Charge of Your Health? Clinical Research Can Play a Key Role

For most of us, medication is a staple in our daily lives. Whether you’re taking Ibuprofen for a headache, Zyrtec for allergies, or picking up a prescription at the pharmacy to treat a more chronic condition, you are ultimately benefiting from the clinical research that made these treatments possible.

Clinical research plays an important role in the development of new treatments and the advancement of medicine, yet its role is not widely understood. That’s why CISCRP, a nonprofit organization dedicated to informing and sharing resources with the public, created our free health and wellness program, Journey to Better Health | AWARE for All.

Traveling to communities across the country, the Journey to Better Health Program’s next stop is in San Diego, where CISCRP will be hosting a free community health event on Oct. 6. This event will be held from 5-8 p.m. at the Scottish Rite Event Center.

Here’s why San Diegans should attend this upcoming health event:

Meet with 20+ local exhibiting organizations.

If you’re looking for specific resources for yourself or a loved one relating to a medical condition, our exhibit hall presents the perfect opportunity to make local connections and access free resources. Our exhibitors include a variety of organizations, including Alzheimer’s Association, The Scleroderma Foundation of California, American Liver Foundation, VA San Diego Medical Center, Pacific Research Network, and many more.

Receive free health screenings – no health insurance needed.

In addition to the resources offered by our exhibiting organizations, this event offers opportunities to receive free health screenings. Stop by the Sharp Research Institute’s table to learn more about their services and take a memory screening, or receive blood pressure and glucose screenings from Velocity Clinical Research. Rapid Hb1AC tests will also be available.

Hear what to expect when joining a clinical trial and how they are conducted.

If you’ve never been in a clinical trial, you may not know how the process works, what to expect, or even how to find a study you’d like to be a part of. Listen to an overview presentation that shares the basics of the clinical trial process, how they have been made safe for patients, the importance of diverse representation in clinical research, and how to decide if participating is right for you.

Listen to San Diegans share their experiences participating in clinical trials.

Without study volunteers and the healthcare professionals who oversee these studies, clinical research would not be possible. Hear from local community members who share their experiences participating in a trial in a panel discussion. Our panelists will share why participation is important to them, ways clinical research can be made more inclusive, and will take time to answer any questions attendees have.

Education is power.

When it comes to our health, the more knowledge we have about our options, the better choices we can make for ourselves or loved ones. Attending Journey to Better Health | AWARE for All – San Diego will provide attendees with vital informational knowledge about the health and wellness resources available to them, including clinical research participation.

Written by Lindsey Elliott | Marketing and Communications Manager, CISCRP

View this article published by Times of San Diego, here.

Learn more about CISCRP’s AWARE for All program and upcoming events 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.

Volunteer opportunities with CISCRP, visit our Volunteer page

DEI Series — Educating Clinical Research Practitioners Through Video

Recently, CISCRP partnered with WCG to create a video for researchers and study staff that emphasizes the importance of diversity in clinical trials. In addition to educating the public, raising awareness among research professionals about the importance of Diversity, Equity, and Inclusivity (DEI) is critical to increasing cultural competence and understanding of participants’ needs.

You may have read our post about how videos are becoming a key tool of health literacy, and how clinical research could benefit from more videos communicating information in an accessible way. In this post, we dive into our creative process for producing a video with that objective in mind.

We were delighted to collaborate with WCG on this video. WCG partnered with CISCRP to produce this video because of our expertise in educating the public and clinical research professionals about the importance of diversity in clinical research. Like CISCRP, WCG is committed to helping ensure that the public gets the most effective and safe treatment possible.

Because of that urgent need, WCG were very excited to work with CISCRP on addressing this topic. We know this engaging video collaboration will help energize researchers, and especially site staff, to bring more diversity into their trials.

To see the video, click here.

Research and Creative Planning

As with any complex project, whether you’re writing a novel or baking a cake, it’s important to plan every step in advance. However, for this project, assessing our audience’s needs, perceptions, and general level of cultural competency would determine how we structured the tasks ahead – so we started there.

The purpose of this video was simple: to encourage clinical research professionals to take tangible actions to ensure their trials had diverse populations. Given our experience developing educational materials on diversity in clinical research by collaborating with patients, their communities, and the public to understand their concerns and needs, we knew the key messages researchers needed to see and hear. Delivering that message in a way that will have an impact was the challenge.

Clinical research professionals may already know about the importance of diversity in clinical research and may even know about the available tools and practices to improve their trial’s diversity. So, how could we convince them to make more of an effort to invest in and implement these tools and practices?

We certainly didn’t want to bore them with information they already knew. Instead, we decided to focus on an impactful narrative to give them that extra push and reinvigorated perspective. And we had to do it in under 3 minutes.

Script

We decided on an animated video that portrayed a realistic scenario: patients from a diverse background whose prescribed treatments were not as effective or tolerable as demonstrated in the less diverse study populations during clinical trials. The storyline focuses on one patient to begin with, then shifts to a larger patient population who all realize that the clinical trials for the treatment they needed did not include patients from their respective communities.

As each patient asks their doctor some tough questions, treatments disappear from the shelves of the pharmacy shown in the animation:

“Could my race affect how this drug works?”

“Was the drug tested on women like me?”

“Could my weight be why this drug didn’t work?”

Then in the final scene of this part of the video, the problem is summed up by a disappointed patient:

“I think I understand. They didn’t test this for people like us.”

After the scenario, the narrator addresses this problem directly to the audience. It was important that the messages were not received as a critique of researchers—as we say in the video, there’s already so much good work they’re doing. Rather, we wanted to bring this subject to the top of their minds and say that by taking steps to ensure diversity in their trials, we can avoid situations like the one they just watched.

The script went through several drafts which included reviews from CISCRP’s team, our WCG collaborators, and subject matter experts on DEI in clinical research. Each round of feedback included more voices and perspectives from folks in the clinical research world. As a result, each draft became more engaging, appropriate, and relatable to our intended audience.

For example, the original plan was to follow one patient. In the final script, we decided to combine the stories of five diverse participants. Then we realized that our characters’ names were not diverse. At first, they were named common names, which likely wouldn’t represent the diverse groups that are underrepresented in clinical research. We also ensured we represented the doctor, a “Dr. Smith,” from a white man to a black woman.

Key Learnings

In early drafts of the video animations, while the characters had different skin tones, they didn’t have other aspects that represented diversity. Something important we all have to keep in mind is that diversity comes in many different forms—from some of the more obvious things, like race, ethnicity, sex, and gender, to more specific details like health conditions, weight, and even lifestyle. So, we made a few subtle tweaks to represent diverse bodies, appearances, and cultural appearances.

Also, in choosing the voice-over actor, we settled on someone who represented a diverse population to add credibility to the messaging.

Some of the considerations went beyond diversity. We wanted our video to feel real, because the scenario we crafted is something that unfortunately happens too often. Given the prevalence of this issue, we also wanted the video to demonstrate sensitivity towards the difficult situations participants often face.

For example, in early drafts of the video, the doctor was smiling throughout, even as she learned that her patients were suffering. Not only is this not realistic, it appeared insensitive and even offensive. Still, we had to find the balance between making character emotion powerful while making sure they didn’t act like children’s cartoon characters.

Finally, once we were done tweaking the thematic elements of the video, we polished the presentation to a fine, professional gloss. Over the course of three drafts, spread out over weeks of review, we gave feedback on the timing of edits, the tone and speed of the voice actors through specific sections, and the subtle connotations of the animated characters’ movements. All of this was to ensure that this video was produced to the highest standards.

Never call it a day

As we’ve mentioned in other posts, the health literacy process does not stop here. We want to learn how effective this video is, and what we can do to improve our communication and education in future projects. Whether we’re making content for a professional audience or for the general public, the insights we gain on any given project accumulate and inform the production of future projects.

Written by Scott Finger, Senior Editor – Health Literacy, CISCRP

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.

Volunteer opportunities with CISCRP, visit our Volunteer page

Voices from Within: Humanizing Clinical Research Data: Episode 3- Conversations on Clinical Trials

Jane Myles, Curebase’s VP of Clinical Trial Innovation, Sean Lynch, VP of Clinical Operations, and patient Qiana Alexander discuss the difference between clinical data and experiential data, focusing on the patient point of view. In their engaging conversation, they shared the importance of collecting patient experience data, how patient input/insights can be used to assist in trial design for decentralized clinical trials, and the difference in how DCTs enable gathering patient feedback.

View the webinar below.

Watch Webinar Episodes 1 & 2

Voices from Within: Humanizing Clinical Research Data:
Episode 1- Patient Data Collection 101
Watch Here

Voices from Within: Humanizing Clinical Research Data:
Episode 2 – Conversations on DCTs: Data Privacy
Watch Here

Panelists:

Jane Myles
VP, Clinical Trial Innovation, Curebase

Sean Lynch
VP of Clinical Operations, Curebase

Qiana Alexander
Lupus Clinical Trial Participant

Considerations for LGBTQ+ Inclusion in Clinical Research

Diversity, equity, and inclusion in clinical research starts with awareness of the perceptions of different communities. Repairing and reducing mistrust within underrepresented communities means learning how to recognize the obstacles and increase sensitivity for inclusion.

This Report:

Shares healthcare experiences of individuals in the LGTBQ+ community, as well as relationships and interactions with healthcare providers
An assessment of awareness of clinical research and drivers for participation and retention, as well as highlights and lowlights of past trial experiences
Identifies ways to raise awareness among and better engage the LGBTQ+ community in clinical research

About the Report:

CISCRP and Teckro partnered to organize and facilitate a virtual advisory meeting among LGBTQ+ patients and community members. The purpose of this initiative was primarily to help inform clinical study staff and industry on considerations and best practices when engaging with the LGTBQ+ community, ultimately optimizing clinical trial experiences in the future. This article was originally written and published by Teckro, available here.

Additional Resources:

Read Broadening the Lens of Diversity for More Inclusion in Clinical Research | Written by Malia Lewin, Teckro

Read Improving LGBTQ+ Inclusivity in Ovarian Cancer Care | Written by Clara MacKay, World Ovarian Cancer Coalition

Download CISCRP’s infographic: Healthcare Provider Best Practices to Improve Experiences for LGBTQ+ Patients

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.

Volunteer opportunities with CISCRP, visit our Volunteer page.

Inclusive Clinical Trials Could Improve Health Outcomes

In the U.S., Black people are twice as likely than white people to get Alzheimer’s disease, according to data from the National Institute on Aging. Yet one study that began in 2016 to develop a drug to treat Alzheimer’s had almost no Black participants.

This is not unique to Alzheimer’s research. While 30% of all U.S. prostate cancer deaths are among Black men, they make up only 3% of participants in cancer clinical trials.

Health experts say this lack of representation leads to widening health disparities and ballooning health care costs. An upcoming event in Indianapolis aims to increase awareness about the importance of diversity in clinical research.

Journey to Better Health | AWARE for All – Indianapolis will take place from 5-8 p.m. Sept. 14 at the Ivy Tech Community College Culinary and Conference Center. The event is free and organized by the nonprofit Center for Information and Study on Clinical Research Participation.

Panelists will answer questions like what to expect as a clinical trial participant and the benefits and risks of participation.

One of the panelists will be Lena Harvey, a 37-year-old Indianapolis woman who lives with sickle cell disease. Harvey will discuss her experience as a participant in clinical trials.

While there are many reasons for lack of representation in clinical trials, Harvey said trust in the medical community is a big one.

Many of her older family members and friends do not interact with the health care system outside of emergencies or urgent problems because of the history of medical abuse. But she thinks that’s changing, as Black community members, especially young people like her, have access to more information than ever before.

“We are more connected than ever,” she said. “The Internet absolutely changed everything. It offered us a more level playing field in terms of access to information.”

This includes access to support groups, patient advocates as well as information about clinical trials and specific doctors.

Harvey said she has taken a proactive approach to her health, empowering herself with information to make sure she got the care she needed. She participated in two clinical trials on drugs and procedures for sickle cell disease. Plenty of internet research and conversations with her husband and trusted sickle cell physicians helped her come to the decision to enroll. She understood that even if the trials did not help her personally, the results of the studies could help others down the road.

“Because sometimes it takes several years, decades for people working on something to get it to where it really needs to be. None of that work is in vain,” she said.

Why Representation Matters

Clinical trials are typically initiated by a research question from community organizations or scientists at academic centers or industry labs.

Then, funding flows in from federal agencies, the private sector or charitable foundations. The clinical trial team then recruits participants through social networks or primary care settings. This is where more than half of the trials fail.

According to a report from the National Academies of Sciences, Engineering and Medicine, 55% of clinical trials stop because they were not able to recruit the participants needed to complete the study. This happens even after money and resources have been flowing into the trial for months or even years.

The financial fallout from lack of representation in clinical trials extends to individuals and their communities.

Disparities for some health and quality-of-life outcomes, including life expectancy and years in the labor force due to physical ability, could be mitigated if clinical trials were more inclusive.

“Of course, better representation in clinical research will not completely alleviate these disparities—after all, they have many interconnected and interdependent causes. However, to the extent that representation in clinical research may improve generalizability of scientific findings across a range of clinical studies for these important health states … representative clinical research may play a role in alleviating these inequities,” according to the NASEM report.

If better representation in clinical trials would alleviate just 1% of health disparities, it would result in economic gains of as much as $40 billion for diabetes and $60 billion for heart disease alone, the report explains.

Treatment and Prevention Depends on Studies

Experts refer to a drug called warfarin as a cautionary tale of how lack of representation can be detrimental to patients’ outcomes. Warfarin is used to prevent clots in blood vessels and is crucial to prevent deadly conditions like strokes and pulmonary embolisms. It is also a leading cause of adverse drug events in the U.S. because the wrong dose of warfarin can result in complications like excessive bleeding and even death.

Patients require different doses of warfarin, and that’s largely because of genetic factors. For example, patients of African ancestry require a higher average daily dose of the drug than patients of Asian ancestry. But most of the trials studying warfarin involved white people of European ancestry. Warfarin was approved for human use in 1951, but it took 62 years for scientists to learn that genotype-guided dosing is important for patient outcomes.

But it is not just the development and utilization of drugs that is affected by lack of representation in clinical trials. Preventative measures such as screening for certain diseases is also at stake.
One example that the NASEM report gives is screening for colorectal cancer in Black adults. The U.S. Preventive Services Task Force, which informs screening recommendations for different diseases, was not able to “make a separate, specific recommendation on colorectal cancer screening in Black adults” because of the lack of representative studies on Black adults. But data show that Black adults in the U.S. have the highest rates of being diagnosed with and dying from colorectal cancer. Other national guidelines suggest that they can benefit from earlier screenings.

This story comes from a reporting collaboration that includes the Indianapolis Recorder and Side Effects Public Media, a public health news initiative based at WFYI. Contact Farah at fyousry@wfyi.org. Follow on Twitter: @Farah_Yousrym.

To read the original article and learn more, visit here: https://indianapolisrecorder.com/inclusive-clinical-trials-could-improve-health-outcomes/

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.

Volunteer opportunities with CISCRP, visit our Volunteer page.

Improving LGBTQ+ Inclusivity in Ovarian Cancer Care

In 2021, when the World Ovarian Cancer Coalition surveyed our advocacy partner organizations about what topics they would like to see on the agenda for our inaugural Partner Meeting, LGBTQ+ inclusiveness was a frontrunner topic.

Many of the organizations that we work with do outstanding work in this area. However, and encouragingly so, there is increased recognition across the Coalition and within the global cancer community of the need to address the lack of diversity of data within cancer science. As well, there is a growing awareness of the need for relevant information, services and support to improve the experience of cancer care for those from the LGBTQ+ community.

From an ovarian cancer awareness perspective, there are specific messages for the LGBTQ+ community that need to be communicated. This includes busting myths, like the misconception that having your ovaries removed eliminates the risk of developing ovarian cancer. In addition, within the lesbian and bisexual communities, for example, fewer people take oral contraceptives, give birth, and breastfeed compared to heterosexual women – which are all factors that reduce the risk of developing ovarian cancer.

We also know that issues related to gender dysphoria, discrimination and adverse experiences with healthcare can impact a person’s willingness to trust or access health services.

Combating Barriers Facing LGBTQ+ Individuals

Our own work in this area started with a decision to run a LGBTQ+ focused awareness campaign during June under the banner of No Person Left Behind.

Our first step was to draw on the expertise within our partner organizations and stakeholders from the wider LGBTQ+ community. Noteworthy input came from Stewart O’Callaghan, founder of Live Through This and one of the Coalition’s partner organizations, Ovacome, and Tristan Bilash, a clinical oncology social worker, transgender man, and ovarian cancer suvivor.

I also participated in the LGBTQ+ focus group that Teckro sponsored, hosted by the non-profit organization CISCRP. Here, I listened to members of the LGBTQ+ community share their experiences with healthcare and clinical trials, and the steps that could be taken to improve these interactions.

The combination of all of these discussions has flagged-up some significant challenges that will take time to address, including:

Societal biases against the LGBTQ+ community
Mistrust by LGBTQ+ people towards healthcare providers and systems
Lack of awareness of ovarian cancer and the specific risks for those who are part of the LGBTQ+ community
The shocking lack of diversity that exists within cancer research, including clinical trials
We need to work much, much harder to combat these barriers.

But I was also struck by some of the very simple and foundational ways we can make health services more welcoming and accessible to the LGBTQ+ community. We need to start with basic healthcare and then expand awareness and accessibility of clinical trials for this community.

Images and Words Matter

When it comes to something as personal as healthcare, people want to see themselves reflected back when they approach awareness information or a healthcare provider who will be privy to the most personal aspects of their lives.

Language is also key. Almost everyone we’ve listened to has shared a personal experience of completing medical forms that only offer male or female as gender options. They are not asked about preferred pronouns, or healthcare providers – either intentionally or unintentionally – use the patient’s “dead name.” (Deadnaming is the act of referring to a transgender or non-binary person by a name they used prior to transitioning, such as their birth name.)

Using the correct names and pronouns are meaningful ways to show respect, as they are wholly entwined with the concept of personal identity. Breaking the ice on this front can be as simple as health professionals sharing their own pronouns.

On a systemic level, it is also important to expand understanding that every person is a unique individual and should be approached as such. One of the most powerful stories we’ve heard is from from Tristan, a transgender man who is also an advanced ovarian cancer survivor. Tristan’s follow-up CA125 test was cancelled because the laboratory software restricted CA125 tests to female patients only. Tristan’s health card, and subsequent lab requisitions, reflect he is legally male so his test was automatically filtered out.

Everyone Deserves Best Quality of Life and
Chance of Survival

Many starting the journey into LGBTQ+ inclusivity worry about getting terms wrong or unintentionally offending people. One message that has come through quite clearly in our discussions is that mistakes will happen, and no one will get it right 100% of the time.

What is more important is that the conversations take place – and that they happen in good faith. Sincerity of purpose, genuine and honest dialogue, and being transparent about your limitations in knowledge and experience are the most important steps any person, organization, or company can take as they move towards building trust and a more inclusive future.

We can never truly know what it is like to be in someone else’s shoes, whether they be of a different economic status, live in another country, or identify a different way. As a Coalition, we acknowledge this and celebrate the diversity of our global community. And we are committed to our belief that every person with ovarian cancer deserves the best quality of life and best chance of survival – no matter where they live, who they love, or how they identify.

Written by Clara MacKay, CEO, World Ovarian Cancer Coalition

To read the original article and learn more, visit Teckro’s website here: https://teckro.com/resources/blog/lgbtq-inclusivity-ovarian-cancer-care

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.

Volunteer opportunities with CISCRP, visit our Volunteer page.

Patient Data Collection 101: Curebase FLASH Webinar Overview

There are a variety of ways in which patient data can be collected in clinical research. As such, it’s critical to keep patients informed on these methods as they progress through trials. In Episode One of Voices from Within: Humanizing Clinical Research Data, Curebase experts share a comprehensive overview of how patient data is collected and the safeguards in place. This 15-minute Flash Webinar was led by Vice President of Clinical Trial Innovation, Jane Myles, and Director of Data Management, Kim Andreasen.

“There are many existing myths and stories regarding data collection in clinical trials,” Jane notes. On a foundational level, there are two types of clinical trials: brick-and-mortar and decentralized clinical trials (DCTs). The traditional brick-and-mortar trial refers to in-person visits that take place in centralized hospitals and doctors’ offices with care teams. With technological advances, DCTs have become available to patients, making healthcare more accessible to a wider more diverse population. This format allows participants to participate in clinical trials from remote settings through technology-enabled services including telehealth appointments, at-home testing, mobile phlebotomists, and more. Some DCTs even utilize patients’ own local doctors to perform wellness checkups, biopsies, and other care procedures that require an in-person aspect.

“Ultimately, the purpose of clinical trials continues to be the collection of clinical data to make decisions about the safety and efficacy of new treatments,” Jane explains. For research teams, data collection is the primary deliverable of clinical trials. A recent study by Tufts University concluded that the amount of data collected each year in clinical trials is increasing exponentially, likely caused by new technology, new research fields, and other variables.

Understanding the importance of data collection in clinical trials is critical. Understanding as a patient how your data is being collected, used, and protected is even more important. Kim, an expert in data management, breaks down the process of data collection. To begin, participants share information with their clinical trial care team or provide this data themselves through survey responses about their experiences, symptoms, and medical history. Further data is collected through medical testing, dependent on the type of treatment the participant is in a trial for.

Once this data is collected, it’s then digitized. Clinical data management systems assign numbers to patients, controlling who can see their personal information. “This process is called deidentification, where the actual data sent to government entities for drug approval cannot be linked back to individuals,” Kim explains. “This is set by global and national regulations in each country.” It’s important to note that although patient data collected cannot be traced back to individual people, physicians and study staff still have access in the case of medical intervention should a patient have a health risk or concern. This adds an additional layer of safety for patients.

As a participant, do I have the right to review my own data?

“As a patient in any medical situation we have the right to see our information. As a clinical trial participant, not all information will be available immediately unless there is an emergency regarding the health of the patient,” Kim notes. There are circumstances in clinical trials where studies require blinded data to ensure accurate results. If this is the case, that information will not be available to participants immediately. For example, if you were testing a diabetes drug and a lab value could give away which treatment group you were in, you would likely not be able to view that data until your participation had concluded.

“Clinical trials are all about collecting data in a rigorous way,” Jane summarizes. “That data is managed in a way that protects privacy and allows physicians appropriate medical oversight of the patient. Ultimately, the data is used to make decisions on the safety and effectiveness of new treatment options – we take immense care of the data to ensure its complete and accurate!”

Learn more about patient data collection by accessing the webinar recording here. View CISCRP’s library of webinars and podcasts 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.

Volunteer opportunities with CISCRP, visit our Volunteer page.