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Project Data Sphere kicked off 2021 with exciting news: We have completely revamped our Data Sharing Platform. It’s the largest update and enhancement since PDS originally launched more than 6 years ago.
What does this mean for you?
- It’s easier to find data and gain perspective around what is included within each study or contribution.
- Along with improved navigation, we have integrated content from clinicaltrials.gov so you have visibility to additional metadata.
- If you are interested in finding any data curations or what we consider linked-data, such as the AHRQs Medical Expenditure Panel Survey data, it’s incredibly easy to find through new filter options.
- You will also notice that the process for contributing data is greatly improved.
Thanks go to our active user community (now over 3,000 registered) for making this platform what it is today. We are listening and striving to maximize data reuse, advance oncology research, and serve our patient population.
Feedback has been gratifying. A user from the University of North Carolina with a newly accepted publication said, “Thank you for building this amazing platform so we could use the data to tackle real problems.”
The trust and engagement by data-sharing partners remain a critical piece of the platform. A big shoutout to Merck KGaA (EMD Serono), Eli Lilly, and G1 Therapeutics for their recent contributions across Glioblastoma, Pancreatic Cancer, Small Cell Lung Cancer, and Non-Small Cell Lung Cancer.
Every data contribution counts, and Project Data Sphere is committed to advocating on behalf of all patients participating in clinical trials by driving greater reuse of their individual data. Our laser focus for 2021 is ‘Data Reuse’ through stronger positioning of our sharing platform and analytics space, active research programs, and by establishing key partnerships to drive progress.
We have been working hard to plan an upcoming virtual symposium on this topic so mark your calendar for September 23 and join to hear how effective reuse of clinical trial data can lead to faster approvals and gain insights around how you can contribute to this critical ecosystem.
Registration is open and free for the annual SAS Global Forum, May 18-20, which brings together the brightest minds in analytics. The analytics community comes together to exchange ideas in a one-of-a-kind conference – where learning, training, networking and inspiring sessions converge.
The Global Forum 2021 is complimentary to all attendees. Each participant in the virtual event will have access to general sessions, breakout sessions, the exhibit hall, training sessions and networking opportunities all at no cost.
Speakers include SAS executives Jim Goodnight, Co-Founder and Chief Executive Officer as well as one of the Project Data Sphere™ Directors. Other speakers have ties to the Ted Podcast Worklife and NASA, consult on artificial intelligence and are well known entertainers.
There will be more than 150 sessions, real-world stories from frontline leaders, meetings with technology and industry experts, live demos in the Innovation Hub, and access to world-class training at no cost.
Registration is online: https://www.sas.com/en_us/events/sas-global-forum.html
SAS is a member of the CEO Roundtable on Cancer and a longtime Gold Standard accredited employer.
Did you know that the CEO Roundtable on Cancer now reaches 36 states with a member company or Gold Standard™ accredited company?
That’s one of the updates in our Annual Report that went out by email at the end of January / first of February. It also recounts accomplishments of 2020 and highlights priorities for 2021 and beyond.
If you missed the Annual Report, you can find it here on our website.
A manuscript published in December 2020 in Contemporary Clinical Trials Communications highlights work by Project Data Sphere and RTI International (RTI) to improve access to clinical trial data supporting research on health care disparities.
“Enhancing the Analytic Utility of Clinical Trial Data to Inform Health Disparities Research” describes how Steven B. Cohen and his team at RTI are augmenting selected PDS patient-level cancer phase III clinical datasets by linking the social, economic, and health-related characteristics of like cancer survivors from nationally representative health and health care-related survey data from the Medical Expenditure Panel Survey (MEPS).
MEPS, sponsored by the Agency for Healthcare Research and Quality (AHRQ), is the nation's primary source of nationally representative, comprehensive, person-level data on health care use, insurance coverage, and expenses.
“Clinical trials, for example, are used to identify safe and effective treatments for all those with cancer but are often conducted among younger, healthier, and less racially diverse patients than the population at large,” the article notes. “As a result, there is an increasing interest in diversifying clinical trial patients to ensure that resultant treatments are suited for those who are disproportionately affected in the first place.”
Data providers are required to de-identify patient-level data before submitting it to PDS. That means removing social and demographic content that could otherwise be used to study underserved populations and factors that contribute to health inequities.
With support from the Robert Wood Johnson Foundation, PDS and RTI International are working to address that gap. The enhanced data will help researchers explore the influence of healthcare access, socioeconomic factors, and health behaviors on the patient-level representativeness and outcomes data.
At our Vision 2020 Annual Conference and Meeting, our Founding CEO Bob Ingram shared that the U.S. President’s Cancer Panel on which he is a member is looking closely at “Improving Resilience and Equity in Cancer Screening: Lessons from COVID-19 and Beyond.”
The Panel identifies high-priority topics, convenes meetings with key experts, frames possible recommendations, and submits a report to the President of the United States.
Ingram challenged conference participants to maintain Gold Standard accredited status. “The best thing we can do as the CEO Roundtable on Cancer members is to strive to be Gold Standard in our practices while encouraging others to join in and grow membership,” he said.
Read more or watch the video here.
Merck KGaA, Darmstadt, Germany, operating under the name EMD Serono in the US and Canada, has been honored with the 2020 Dr. Charles A. Sanders Award for collaborative scientific research in cancer.
Merck KGaA, Darmstadt, Germany, has been part of the CEO Roundtable on Cancer since 2012 and has earned CEO Cancer Gold Standard™ accreditation since 2011. In 2017, the company partnered with Project Data Sphere to establish the Global Oncology Big Data Alliance (GOBDA) to fuel collaborations in oncology, data science, and regulatory policy.
"Here at HPU, we place a high priority on employee wellness because a happy person is a healthy person,” says HPU President Dr. Nido Qubein. “We prepare our students for the world as it is going to be and to do that, we need our faculty and staff to feel their best every day. We will continue to stay committed to keeping our employees and our campus community at their healthiest.”
Experts from the U.S. Food and Drug Administration (FDA), industry, and academia convened on October 7 for a virtual symposium on Rare Cancer Registries. Dr. Julia Beaver, Chief of Medical Oncology at the FDA said the meeting focus was: “To address critical questions in the field of rare cancer registries, with an ultimate goal to drive improvements in patient treatment, bringing safe and effective drugs to patients with rare malignancies in the most efficient and expeditious manner.”
The speakers shared how registry data have been used to advance research and improve clinical care for rare cancers within their own disciplines, discussed best practices for registry construction and data application, addressed how to integrate diverse types of data to make rare cancer registry data even more valuable, and strategized how best to support data-sharing and generalizability. Throughout the presentations and discussions, collaboration, transparency, and long-term planning emerged as fundamental to the most effective use of this powerful research tool.
Here is the link to read more or watch the videos.
We are grateful to all who participated in the CEO Roundtable on Cancer Vision 2020 Annual Meeting and Conference. It was a vibrant and collaborative forum that helped progress our shared mission of advancing cancer prevention, diagnosis, and treatment.
Leaders outline priorities for 2020 and beyond
Although it was the 19th such event, the Annual Meeting on September 22 was the first virtual meeting due to the pandemic and the first to offer a series of workshops aimed at a range of company leaders who could participate online. CEO Roundtable on Cancer Chairman Bob Bradway, also CEO of Amgen, led the session with a challenge and call to action.
“Amid all the uncertainty and disruption caused by the COVID 19 pandemic, some things have remained the same and one of them, sadly, is that cancer never takes a day off. We can’t let the distraction of the pandemic take our eyes off the unacceptable toll in terms of death, pain and suffering that’s caused by cancer.”
- Bob Bradway, Chairman, CEO Roundtable on Cancer
Dr. Andy Crighton, CEO of the Roundtable on Cancer, said the work of the Roundtable has not slowed down. He said five new members were added to the organization: Menarini Group, BeiGene, Daiichi Sankyo, Foundation Medicine and Alphanumeric Systems. We are reaching out to new sectors including financial and technology to build on a base of life science members. The expertise of these sectors is needed as we expand Gold Standard accreditation and seek to accelerate cancer research.
Crighton noted that the Gold Standard remains an accreditation and not an award. “An accreditation is earned and must be maintained. Therefore, you can be assured that a Gold Standard company still has the practices and policies in place even with a change in leadership,” Crighton said.
He announced the Gold Standard is being expanded to include well-being.
"The definition of well-being is how people think, feel and function on a personal and social level and how they evaluate life. Organizations can have a positive or negative impact on an individual’s well-being. Individuals with a strong sense of well-being are better able to withstand critical issues such as a cancer diagnosis so it is important that we build this into our Gold Standard to help companies move forward."
- Dr. K. Andrew Crighton, Chief Executive Officer, CEO Roundtable on Cancer
MaryLisabeth Rich, CEO Roundtable on Cancer President, congratulated Bristol Myers Squibb for its Global Gold Standard achievement and welcomed newly Gold Standard accredited organizations Anne Arundel Medical Center, High Point University, Huntsman Cancer Institute, and Memorial Hermann Health System.
She said the Gold Standard update includes an important focus on health equity, which will be incorporated in each pillar. This focus has inspired a new initiative to launch in early 2021 that looks to partner Gold Standard companies with Historically Black Colleges and Universities (HBCUs) to accelerate our mission and extend accreditation benefits to communities experiencing cancer disparities. Since the meeting, the scope of the project has expanded to include Hispanic-serving institutions.
“We want to make the Gold Standard Pillars active and living in the HBCU setting so they are not just applicable to HBCU employees but to students and communities. The cancer belt in the US overlaps with the strongest geographic concentration of HBCUs. CEOs are equipped to do this because of the Gold Standard framework, because corporations have high impact and care about the communities where they live and work and because health is a priority for each and every one of our members."
- MaryLisbeth Rich, President, CEO Roundtable on Cancer
Crighton said another CEO Roundtable initiative, Project Data Sphere, is making great strides in delivering research results and data access. He said that in 2021 we “need to broaden the view of how we look at data and be able to incorporate new data with restricted access for a short period of time but then continue to look to put it into the open platform.”
Bill Louv, President of Project Data Sphere, agreed that his team is making steady progress getting more data on the platform. He said usage of that information is increasing and a reflection of productivity, the number of peer-reviewed journal articles based on platform data, is up to 87.
“That is dramatic evidence demonstrating that open sharing is a very effective model,” Louv said. But he warned that, “there are some headwinds here with increased concern about privacy, about IP, about cost of deidentifying data sets. We see some of our data providers becoming more reticent about sharing patient level data.”
He said PDS will take a leadership position in advocating for more sharing and reuse of clinical trial data.
“We provide patient level data in an open science platform. That is unique. The other platforms have accomplished great transparency and discoverability by bringing together meta data for most of the clinical trials that are sponsored in this country. There’s quite a path from discoverability via meta data to actually acquiring or getting permission to use the patient level data.”
- Dr. William Louv, President, Project Data Sphere
Louv also gave an update on the five PDS research programs that leverage data from the platform.
The meeting was followed by a series of shorter sessions focused on well-being, health disparities, data sharing and AI applied to measuring tumor progression. In a general session, Roundtable Founding CEO Bob Ingram shared about the work he is doing as a member of the President’s Cancer Panel.
The CEO Roundtable on Cancer Board of Directors approved a refresh of the CEO Cancer Gold Standard™, its employer-led health and wellness accreditation program, at a September meeting.
One key change is increased focus on well-being in the workplace. Dr. Andy Crighton, CEO of the Roundtable on Cancer, said: “Individuals with a strong sense of well-being are better able to withstand critical issues such as a cancer diagnosis so it is important that we build this into our Gold Standard to help companies move forward.”
MaryLisabeth Rich, CEO Roundtable on Cancer President, highlighted a focus on health equity that will be incorporated in each pillar and, as part of a new initiative to launch in early 2021, that will look to extend the CEO Cancer Gold Standard to Historically Black Colleges and Universities(HBCU) and Hispanic-Serving Institutions (HSI).
“We want to make the Gold Standard Pillars active and living in the HBCU and HSI setting so they are not just applicable to employees but to students and communities,” she said. Ways to grow this partnership opportunity were discussed in the Diversity Partnerhip session lead by Dr. Otis Brawley. You can read more or watch the video here.
“We are honored that Huntsman Cancer Institute has been welcomed into the Gold Standard community,” said Mary Beckerle, PhD, chief executive officer of HCI. “As the official cancer center of the state of Utah, we must take our own best advice and implement programs that prevent cancer and reduce cancer risk for our own workforce. This recognition strengthens our commitment to work together to deliver a cancer-free frontier.”
Welcome to our newest member, Alphanumeric Systems, and their Chief Executive Officer Randy Trice!
Alphanumeric helps life science companies improve the HCP, patient, and employee experience with a digital transformation of the Healthcare Professional (HCP) & patient experience, global contact centers powered by AI and talent, omni-channel strategy, localization efforts, and more. It is a multinational company with offices in five countries.
Trice started at Alphanumeric Systems Inc. in a consulting capacity to develop its sales and market growth strategies. In January of 2018, he became CEO of Alphanumeric, and has restructured the company to focus on client expansion and to pursue a platform that emphasizes Life Sciences and Artificial Intelligence.
He began his career on Wall Street with Donaldson, Lufkin, and Jenrette. Trice then served as Managing Director at Refco Inc., where he ran the risk management group in oil and gas derivatives and served on the Natural Gas Advisory Board for the New York Mercantile Exchange. After leaving New York City, he was the President of several companies in Texas, including Contego Solutions and Source Inc., that specialized in information technology, IT outsourcing and unified communications.
Alphanumeric Systems and Randy Trice, Chief Executive Officer. Alphanumeric helps life science companies remove the friction from the HCP, patient, and employee experience. We do this by adding a digital transformation of the Healthcare Professional (HCP) & patient experience, global contact centers powered by AI and talent, omni-channel strategy, localization efforts, and more. Whether you are focused on clinical trials, acquisition, or adherence, Alphanumeric can help. We believe that no matter how great your vision, it is the people who will make that vision a reality.
Are registries the key to advancing treatment of rare cancers? We hope to find answers to that question and to identify obstacles blocking the promise of registries and solutions to overcome those challenges in the FDA-PDS Symposium IX on Oct. 7.
This symposium will be held online for the first time but the goal is the same as in past years: elevate the conversation about this research area, which is ripe for fresh attention and energy from academia, industry and FDA. The event will run from noon until about 3 pm EDT.
We are honored and excited to welcome keynote speaker Dr. David Fajgenbaum, a groundbreaking physician-scientist, disease hunter, speaker, and author of the national bestselling memoir, Chasing My Cure: A Doctor's Race to Turn Hope Into Action.
Fajgenbaum nearly died five times battling Castleman disease. To try to save his own life, he developed and led an innovative approach to research through the Castleman Disease Collaborative Network (CDCN) and discovered a possible treatment that has put him into an extended remission.
We are eager to hear the unique perspectives and insights of Dr. Fajgenbaum. This is a session that’s sure to inspire.
The symposium brings together multiple stakeholders representing most aspects of the rare disease challenge: practice in the clinic, pharmaceutical research, policy and regulatory science, and patient advocacy to brainstorm the operational dynamics between the groups.
Mark your calendar. More details and registration information will be coming via email soon.
Work is progressing to update the Five Pillars of the CEO Cancer Gold Standard™, the employer-led health and wellness accreditation program of the CEO Roundtable on Cancer. Key changes identified so far include increased focus on well-being in the workplace and increased support for cancer survivors and their return to work.
“More than 7 million employees have better access to cancer prevention and treatment because their employer implemented the Gold Standard,” said MaryLis Rich, President of the Cancer Gold Standard and Member Services. “But we’re going for Gold and that requires us to reach higher and expand our influence if we are truly going to fight cancer.”
A Steering Committee of experts is guiding the work, which relies on the latest research about key steps to improve health. The team also is incorporating evidence from recent events such as the pandemic, which emphasize the need for employee resilience. That team includes:
- David Shepperly, MD, Executive Director Occupational Health, Bristol Myers Squibb
- Marcelo C. Targino, MD, MPH, Chief Employee Health Officer & Corporate Medical Director, Johnson & Johnson
- L. Michelle Bennett, PhD, Director Center for Research Strategy, National Cancer Institute
- Otis Brawley, MD, a Bloomberg Distinguished Professor at Johns Hopkins University and a globally recognized expert in cancer prevention and control.
- Ron Goetzel, PhD, Senior Scientist at the Bloomberg School of Public Health at Johns Hopkins.
Information about the CEO Cancer Gold Standard update will be shared at the Annual Meeting and Conference and by email.