Perceptions & Insights: COVID-19 Survey of April 2020

Given the recent increase in attention to the topic of clinical research in the wake of the COVID-19 pandemic, CISCRP conducted a brief survey to assess what impact the pandemic has had on levels of understanding, perceptions, and experiences related to clinical research. This report outlines key findings from this survey. Where appropriate, CISCRP draws comparisons between this brief survey and the 2019 Perceptions and Insights Study (a large-scale global survey on public and patient perceptions of clinical research).

Download the survey here.

Innovative Partnership Nominated for Citeline Award

CISCRP proudly participated in a 2019 collaboration with Biogen, the National Minority Quality Forum (NMQF), Tufts Center for the Study of Drug Development (CSDD), Langland, H.E.A.L. and the FDA’s Office of Minority Health and Health Equity to engage directly with the general public through grass-roots outreach campaigns and events; to listen to their level of understanding, awareness, and concerns through digital channels, in-person meetings and interviews; and to provide resources to support education about clinical research participation. These efforts proved valuable and impactful, receiving endorsement to continue to build and expand these efforts in 2020 and beyond. This innovative 2019 project has recently been nominated as a finalist in the 2020 Citeline Awards for Medidata Clinical Partnership of the Year.

The team worked to better understand the challenges and barriers encountered by African American and Hispanic/Latinx communities in the US regarding awareness, access to clinical research participation, and health care provider involvement in evaluating research opportunities. 

As a part of this large engagement campaign, Tufts CSDD conducted in-depth interviews among minority physicians, investigators and nurses to explore barriers and challenges to clinical trial access and referral, as well as high incidence of minority investigator drop-out rates. An online social listening campaign was launched to follow conversations and sentiments around clinical trials among African Americans and Hispanic/Latinx communities. CISCRP and the NMQF organized public-facing programs that offered free health screenings and educational sessions. The FDA participated in Biogen’s Patient Engagement Day and spoke to the importance of engaging underrepresented minorities in clinical trials.

Insights obtained from these conversations will assist the team in enhancing current structures and implementing new efforts to increase access to clinical trial sites and site participation in clinical trials. Feedback provided by online social listening and healthcare providers reinforced existing barriers to clinical research participation for members of diverse communities.

“While the public continues to acknowledge the importance of clinical research in identifying new medicines, general awareness and participation in clinical research studies remain low for a variety of reasons, and minority populations continue to be underrepresented in clinical trials,” said Ellyn Getz, Associate Director, Development and Community Engagement for CISCRP. “Many learnings from this year-long program will be applied in 2020 to patient engagement strategies, protocol entry criteria, site selection, and patient outreach.”

In 2019, approximately 2,000 people attended NMFQ’s community health events and CISCRP’s AWARE for All programs and learned about clinical trial participation. Over 500 event attendees surveyed indicated that they are somewhat or very interested and willing to participate in a clinical trial and are eager to participate if invited by their health care provider. This indicates an opportunity to further engage, educate, and connect underrepresented patients with clinical trial site teams.

This innovative collaboration has built a strong foundation for continued grass-roots outreach efforts. Biogen is supporting the AWARE for All: Clinical Research Education event series over the next five years as a member of CISCRP’s AWARE Industry Consortium. The consortium addresses the critical need to improve patient diversity in clinical trials.

For more information, please contact Joan Chambers, CISCRP’s Senior Director, Marketing and Outreach, at jchambers@ciscrp.org or Ellyn Getz, Associate Director, Development & Community Engagement, at ellyngetz@ciscrp.org.

Building A Clinical Trials Website that Engages Patients & the Public

In this webinar, a speakers from Merck/EMD Serono, TrialScope and CISCRP discuss building a clinical trials website that engages patients and the public.

Robert Janiak, Head of Clinical Trial Transparency, Merck KGaA, Darmstadt, Germany, which operates its healthcare business as EMD Serono in the US and Canada, reviews the launch of a dedicated clinical trials website using the TrialScope Engage™ platform. Jill McNair, Senior Director, Health Communication Services for CISCRP, discusses how CISCRP obtained patient input and how that feedback guided content creation. Naor Chazam, CMO, TrialScope explains how its technology — syncing clinical trial data to the website and generating robust search functionality — helps patients find and enroll in relevant trials, and keep participants informed of study updates and results.

Access the webinar here.

New Consortium Launched In Partnership with CISCRP to Improve National Clinical Research Literacy

Research in the literature shows that minority communities have a high willingness to participate in clinical trials and high self-reported general knowledge about the clinical research process. Yet, according to a recent study conducted by the Center for the Study of Drug Development at the Tufts University School of Medicine, minority patients – most notably those of Black and African descent– are highly underrepresented in clinical trials of new medical interventions. Tufts research also shows that patient referral rates into clinical trials among practicing minority physicians and nurses are very low.

To address the critical need to improve patient diversity in clinical trials, CISCRP – in partnership with ten leading pharmaceutical companies and clinical research service providers – has launched a new consortium that will focus energy and resources on community-based education during the next five years beginning in early 2020. Consortium members include Merck, IQVIA, Biogen, Otsuka, CSL Behring, Janssen, WCG, Boston Scientific, EMD Serono, and Pfizer. Representatives from each member company will participate on a steering committee and will provide staff and resources to support the planning and execution of live educational events in five targeted urban centers annually.

“This centralized approach is vital to bring together the necessary oversight and infrastructure required to engage with communities from around the country,” said Jonathan Jackson, Ph.D., study volunteer and The Center Director of Community Access, Recruitment, and Engagement (CARE) Research Center at the Massachusetts General Hospital, Harvard Medical School.

The Consortium initiative builds on CISCRP’s 18-year experience producing and hosting internationally recognized live educational events – called AWARE-for-ALL programs — throughout the United States and parts of Europe. Each event engages a local planning committee comprised of members of the public, patients, advocacy groups, health care and clinical research professionals, offers educational presentations and discussions, as well as free health screenings and information about local clinical trial activity. The consortium also plans to mobilize a pop-up educational exhibit in targeted urban health centers to generate excitement and awareness in the weeks leading up to each live event.

“We are thrilled to be working with Consortium members on this important and novel initiative,” said Ellyn Getz, Associate Director of Development & Community Engagement at CISCRP. “Support, input and insight from consortium members presents an unprecedented opportunity to have an even greater impact on advancing public and patient clinical research literacy over a 5-year time period with ongoing continuous improvement,” she added.

ABOUT CISCRP:

The Center for Information and Study on Clinical Research Participation (CISCRP) is an internationally recognized 501(c)(3) non-profit organization dedicated to educating, informing and engaging the public

and patients about clinical research. CISCRP is committed to providing services designed to help professionals best engage patients as partners in the clinical research process. Visit www.CISCRP.org .

Contact Information
Joan A. Chambers
Senior Director, Marketing & Outreach
CISCRP

Phone: 617-725-2750 ext. 202

www.CISCRP.org

 

2019 December Edition

To read the online article, Clinical Trial Participants Are Changing Lives by CISCRP Found Ken Getz, please click HERE.

To read the online article, How a Clinical Trial Participant Became An Advocate for the Sickle Cell Community, by MediaPlanet journalist Kristen Castillo, please click HERE.

A Very Special “Thank You” to Our Sponsors:

BENEFACTOR
Janssen
Merck
Pfizer
Bristol Meyers Squibb

PATRON
Segal Trials
PMG Research
Allergan
Praxis

CISCRP would like to recognize and extend a ‘Thank You’ to Praxis for donating their pro-bono graphic design expertise to create the advertisement.

View the Advertisement.

VIEW AND DOWNLOAD

Medical Hero Spotlight: Melinda Bachini & How Clinical Trials Gave Her Hope

In 2009 Melinda was a paramedic, wife, and mother of 6 when she began experiencing discomfort, which she initially attributed to the hectic nature of her job. However, after discussing her symptoms during a routine check-up her doctor decided to order an ultrasound. It was at this time that a mass was found on her liver. Then on December 1, 2009, Melinda was diagnosed with Intrahepatic Cholangiocarcinoma.

Cholangiocarcinoma, otherwise known as bile duct cancer, is not only rare but difficult to treat. The main form of treatment for patients is often surgery. Initially, Melinda was told the tumor was confined to her liver so, a mere 20 days after her diagnosis, she underwent a procedure to have two-thirds of her liver removed. Just a year later, cancer spread to her lungs. Melinda was now a stage 4 terminal cancer patient.

It was at this time that she took a more active role to learn about her options. Her doctor suggested a clinical trial. Unfortunately, she soon found out that, although the drug would have been provided free of charge during the trial, her health insurance would not cover the costs of the trial’s standard care, such as blood work and scans. In June of 2010 Melinda went forward with a treatment plan that involved chemotherapy. Her first round lasted a period of 6 months. During this time, her cancer spread back to her liver, and she continued treatment for another 6 months. Ultimately, as her symptoms grew worse, she decided to stop chemo. Melinda recalls, “It was a hard decision because I didn’t want my children to think I just gave up. But my quality of life was just so bad.”

At that point, Melinda mostly stopped looking for clinical trials. She found that while there were active trials, many involved chemo. However, upon speaking with her oncologist she became aware of a clinical trial in Maryland at the National Cancer Institute. The month-long trial was federally funded and involved surgery and adoptive cell therapy. Melinda enrolled in the trial in March, 2012. She relates the remarkable change she experienced upon completion of the trial. “Before the trial, I had so many tumors on my lungs that I couldn’t walk without coughing. But after the trial, I started feeling so much better.” Remarkably she was the first person in the trial to have a positive response.

Melinda spent the next 18 months with no other treatments. But over time, tumors started growing again. At this time researchers decided to take a different approach using one of her T cells. Months later she reported feeling much more active. Melinda spent the next 3 years without treatment until ultimately having to undergo surgery to remove tumors in her right lung. Although not officially able to declare herself in remission, she credits her survival to clinical research.

Often when people are first diagnosed, Melinda shares, they feel like there is no hope. But she points out the progress that has been made and the ongoing research being conducted. She emphasizes, “There are more options now than there were 9 months ago. We’re not going to get better treatments out there until clinical trials are done.” Today Melinda continues to share her story and provide support for others as an advocacy coordinator at the Cholangiocarcinoma Foundation. Looking back on her career Melinda says, “I loved being a paramedic, and I wondered, ‘Will I ever find anything I love as much again?’ And I did.”

Written by Leslie Perez, Marketing & Communications Coordinator

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.

Honoring Christine Pierre’s Legacy at AWARE – Baltimore

“Advocate for Your Health” is the underlying theme for CISCRP’s upcoming AWARE for All – Clinical Research Education Day at Johns Hopkins’ Turner Auditorium on April 17. This three-hour program from 5:00pm – 8:00pm will feature free health screenings including HIV and Hep C, mental health, dental and oral, flu vaccines. Attendees will also have the opportunity to interact with research professional and clinical research study volunteer panelists from around the Baltimore area, and a diverse selection of community organizations exhibiting in the Information Alley.

This is a particularly special program to kick off the 2019 event repertoire as CISCRP is dedicating AWARE – Baltimore in honor of former advisory board member, Christine Pierre. Since our founding, Christine has been a passionate supporter of our mission: she served on our advisory board, was involved in our planning team for numerous events, and also personally encouraged industry professionals to support CISCRP’s programs and initiatives. She organized annual study volunteer appreciation events and donated proceeds to the AWARE for All educational initiative. A Medical Hero herself, she contributed tremendously to empowering patients as partners in the clinical research process.

Christine was passionate about and dedicated to communicating the essential role of investigative sites in the clinical research process and in every study volunteer’s experience. Christine and Ken Getz often shared the podium to advocate for this critical relationship. In an interview with PharmaVOICE back in June 2013 that shared the impetus behind launching the Society for Clinical Research Sites (SCRS), Christine stated, “The sites are the closest to the nucleus of this industry – with the center being the volunteers. Without sites there are no subjects, no data, no research, and no advancement of medicine…sites are the only place in the research ecosystem that have the responsibility and privilege of interfacing with volunteers.”

The AWARE for All event and grass-roots outreach campaign focuses on what sites are doing to ensure that patients feel like they’re a part of the team.  It also empowers the public with educational resources and tools to advocate for their health. We miss Christine greatly and are grateful for her tremendous contributions to the clinical research enterprise.

Details:

When: Wednesday, April 17, 2019
Time: 5:00pm – 8:00pm
Where: Turner Auditorium at Johns Hopkins University (720 Rutland Ave, Baltimore, MD 21205)
Cost: Free
Reserve Your Spot Here

Highlights:

  • Free health screenings
  • Free dinner
  • Presentations by researchers, medical professionals, and study volunteers
  • Networking opportunities among patient advocacy groups, community organizations, research centers and sites, academia, CROs, and sponsor companies

Written by Ellyn Getz, Senior Manager of Development and Community Engagement

 

 

From the Editor

With the advent of spring, I think many of us experience a feeling of hope that we won’t have to endure much more wintery weather.  Similarly at CISCRP, there is a sense of hope, but it is year round.  It’s a feeling that the work we do helps to make the world of clinical research a better place. 

Examples of this vibrant feeling permeate through this issue’s articles. In our Medical Hero Spotlight, we learn about the amazing and heartwarming story of Melinda Bachini—a wife and mother who is battling a rare disease, and who has fought it by volunteering in a clinical trial. 

In other articles, we spotlight how:  

  • The American Society of Hematology (ASH) Research Collaborative and CISCRP’s Research Services are working together to engage Sickle Cell Disease communities  
  • CISCRP’s Plain Language Services are critical and are helping the National Cancer Institute 
  • The late Christine Pierre’s legacy lives on in the organization she founded: the Society for Clinical Research Sites  

Christine was a passionate supporter of CISCRP’s mission and a driving force for greater research site sustainability.  Our upcoming AWARE for All Baltimore event is dedicated in her honor.  In addition, we are excited to announce the 3rd edition of Ken Getz’s book, The Gift of Participation.  This new volume contains important updates, as well as an even greater patient focus.  Finally, let me take a moment to congratulate the winners of our first annual virtual fitness challenge, the Medical Heroes Appreci-a-thon.   

Companies with the Most # of Teams:  
1st Place:  Syneos Health 
2nd Place:  Amicus Therapeutics 

Most Spirited Team:  
Mercy Research 

With so many advancements in modern health care and a greater commitment to patient centricity in clinical research, it’s hard not to have hope.  Please enjoy this issue of Partnering in Clinical Research.  

Written by Jim Keen, Associate Director of Marketing, Promotion and Outreach

CISCRP and the ASH Research Collaborative to Engage Sickle Cell Disease Community

CISCRP Research Services is excited to announce a collaboration with the ASH Research Collaborative (ASH RC).  The ASH RC was established by the American Society of Hematology to foster collaborative partnerships, accelerate progress in hematology, and improve the lives of people affected by blood diseases. The ASH RC is working with CISCRP, the organization’s community engagement partner, to facilitate a series of national interactive workshops designed to engage the local Sickle Cell Disease (SCD) communities and learn about their most important needs as it relates to emerging treatment options.  In addition, the workshops will aim to find the best ways to raise awareness of and increase participation in clinical trials for SCD. 

The learning from the workshops will lead to the development of an SCD Patient-Oriented Research Priority Report to be shared with SCD patient and medical professional communities. Findings from the workshops will also generate a long-term, multi-pronged patient engagement plan to accelerate treatment development for SCD.

CISCRP will plan and execute eight half-day community-based workshops targeting four distinct SCD community populations – parents of children living with SCD, adolescents, young adults transitions from pediatric to adult care, and adults living with SCD. All workshops will be conducted during the first year of the project in the following US cities: Orlando, FL; Atlanta, GA; Washington, DC area; New York, NY; Los Angeles, CA; Oakland, CA; Chicago, IL, and Houston, TX.

The workshops’ primary objectives will be to:

  • Better understand experiences of those living with SCD and the communication channels/support systems used by each of the four SCD community population segments and their families; evaluate experiences accessing clinical care and treatments 
  • Assess current level of awareness, knowledge, and perception of clinical research; map decision-making process
  • Identify the most critical clinical trial considerations for each SCD patient population segment and their families
  • Cultivate trust and partnerships with local communities by engaging key community leaders to participate in the workshop

We at CISCRP would like to thank ASH RC for their collaboration and for their relentless work to engage patients along the journey to finding answers for sickle cell disease.

Written by Annick Anderson, Director of Research Services