Recommendations for Effective Engagement with Patient Groups around Clinical Trials
Patient Engagement
CTTI Launches New Case Study Resource to Help Drive Better, More Efficient Clinical Trials
Building better clinical trials would be easier if organizations shared the practices that helped them successfully overcome obstacles. CTTI’s new resource, Building Better Clinical Trials: A Case Study Exchange, provides users with easy access to participating organizations to request more information and/or share information with others (via email, LinkedIn, or share icons) for open, honest information exchanges that can improve collaboration and increase the efficiency of clinical trials.
The site features case studies from more than 30 organizations that have applied CTTI’s recommendations and tools to improve clinical trials. These experiences provide helpful information on organizational challenges, opportunities, actions taken, the impact, lessons learned, and advice for others.
One case study that features Horizon Therapeutics’ experience using CTTI’s Patient Group Engagement (PGE) recommendations demonstrates how having access to the right resource can improve many aspects of clinical trial conduction. Jeffrey W. Sherman, Horizon’s Executive Vice President, Chief Medical Officer states, “Having the right tools at the right time can make or break a clinical trial. The Building Better Clinical Trials Case Study Exchange will not only make it easier for stakeholders to locate recommendations, resources, and solutions, but it will help them understand how these tools were successfully implemented by other organizations so they can sidestep potential roadblocks and streamline their clinical trials.”
By making these collective best practices and innovative solutions widely available, CTTI’s case study resource provides a forum that facilitates the exchange of ideas to create a clinical trial ecosystem that is more agile and adaptable. As Sonja Cloosterman, Principal Consultant Personalized Healthcare and Medical Affairs at Orikami put it, “The Case Study Exchange not only helps people find practical, actionable resources, but it serves as a way to generate an open flow of information that fosters greater collaboration and has the power to generate a global exchange of ideas within the larger clinical trials landscape.”
The hope is that sharing these lessons and experiences will lead to the creation of more efficient, streamlined trials.
Want to be featured on Building Better Clinical Trials: A Case Study Exchange?
Currently, the site features over 30 case studies, but more are being added regularly. If you are part of an organization that has used one of CTTI’s recommendations or tools and would like to be featured on the site, we may be able to include your story.
By sharing your experience, you can showcase your organization’s success while providing helpful information that will benefit other organizations and facilitate collaboration and knowledge sharing across the research community.
Please reach out to Karisa Merrill today to learn more.
CTTI Selects Three New Patient/Caregiver Representatives for Steering Committee
CTTI is delighted to welcome three new patient/caregiver representatives, Jamil Rivers, Phil Green, and Nuru Noor, to our Steering Committee.
The new patient/caregiver representatives will play a key role alongside the existing CTTI members in CTTI activities to advance CTTI’s vision to Transform Trials 2030. Their voices and contributions will add valuable insight and create transformative practices that advance the future of clinical trials.
Each new representative brings a remarkable background and set of experiences they will use to communicate the current needs of patients and caregivers. Please find additional information about them below.
Welcome Jamil, Phil, and Nuru – we are excited to have you on board!
Jamil Rivers
Jamil Rivers was diagnosed at age 39 with metastatic breast cancer. As someone who holds a Bachelor of Science degree from Rutgers University, two master’s degrees from the University of Southampton and Acadia University, as well as many specialized certifications, Ms. Rivers understands the power of knowledge. In preparation for her battle to survive, she conducted extensive, meticulous research. This led her to a combination of treatments including chemotherapy, improved nutrition, and integrative therapies which have helped her improve and lead an active life that includes hormone therapy.
In 2019, Ms. Rivers used her background in finance, education, and non-profit leadership to launch The Chrysalis Initiative which helps to address treatment disparities and inequities and improve breast cancer outcomes by providing education and navigational support for patients and providers. She also harnesses her knowledge and expertise to benefit several advocacy organizations where she serves on the board and holds other positions.
Ms. Rivers is currently the CFO at Educationworks, Inc. She and her husband, Rick, have three children and reside in Pennsylvania.
Phil Green
When Phil Green was diagnosed with ALS in August of 2018, he immediately dedicated himself to making a difference in the fight against this horrific disease. As a former University of Washington football player on the 1991 national championship team, he knows the value of perseverance. He committed the next 25 years to building a successful career leading companies and teams to develop innovative technology solutions that helped brands such as Sony, Hewlett Packard, and Home Depot.
Today, Mr. Green applies this same dedication, knowledge, and work ethic to help multiple ALS organizations increase awareness of the condition, promote legislation, and raise funds. This devotion extends to a wide array of organizations that span the advocacy, biotech, and research sectors. These include Augie’s Quest, Team Gleason, I AM ALS, the International Alliance of ALS/MND Associations and others where he serves in a variety of leadership and advisory roles.
Mr. Green retired as the VP of Digital Innovation at Beeline Group and lives in California with his wife, Jennifer, and their four children.
Nuru Noor
Nuru Noor’s decision to go into medicine was shaped at an early age by witnessing the impact that medical conditions like diabetes and cancer had on his close family members. These profound, personal experiences left him with a deep appreciation for the challenges faced by both patients and caregivers. It also fueled a commitment for working with people to help them improve their quality of life and minimize the impact of medical conditions on their day-to-day activities. Now, as a fellow at the Cambridge University Hospital NHS Trust in Cambridge, U.K., Mr. Noor combines his insight as a caregiver with his education and proficiency in medicine. He has also worked at a number of volunteer organizations, including a stroke rehabilitation group where he helped people set their targets and meet physical activity goals.
Mr. Noor believes clinical trials should be inclusive and a part of standard clinical care for all patients. His view is that research questions and interventions should address areas of unmet need and that trials should aim to answer questions most important to patients and caregivers. Mr. Noor’s goal is to make a significant contribution that supports his passion for more efficient clinical trial designs. This, in turn, will help to ensure patients receive better treatments at a much faster rate.
New CTTI Steering Committee Positions Open for Patient/Caregiver Representative
One of many ways that CTTI engages with and integrates patients into our work is by having patient/caregiver representatives on our Steering Committee. Now, through 11:59 p.m. ET, Sun., Nov. 22, we are accepting applications for this position. We are looking for patients or caregivers who are self-starters, have personal experience and familiarity with clinical trials, and can work with stakeholders across the research community.
During their three-year term, CTTI Steering Committee patient/caregiver representatives contribute ideas for projects, participate in their conduct and analysis, and are committed to disseminating CTTI recommendations and encouraging adoption of system changes that will improve the efficiency of clinical trials.