Newswise — PLYMOUTH MEETING, PA [June 10, 2020] — Today, the National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—hosted a Virtual NCCN Policy Summit titled Accelerating Advances in Cancer Care Research: A Lookback at the 21st Century Cures Act in 2020. The program included a conversation between the bipartisan sponsors of the landmark legislation, Representatives Diana DeGette (D-CO) and Fred Upton (R-MI), who discussed their plans for Cures 2.0. Amy Abernethy, MD, PhD, Principal Deputy Commissioner of Food and Drugs, The Food and Drug Administration (FDA) held a fireside chat on clinical trials, data, and how real world evidence is changing the research landscape. Don Rucker, MD, MBA, MS, National Coordinator for Health Information Technology, Office of the National Coordinator for Health IT (ONC) spoke about increasing the use of electronic medical records.

“The Office of the National Coordinator for Health Information Technology’s 21st Century Cures Act Final Rule will give patients unprecedented access and control over their medical records,” said Dr. Rucker. “For patients and caregivers affected by cancer, the Rule, when fully implemented, will improve care coordination by allowing patients to aggregate and share records across clinicians, increasing a patient’s agency to take their records and seek further opinion. The Rule will also allow new opportunities for patients to participate in clinical trials and contribute data to researchers working on new treatments and cures.”

The need for improving patient access to medical records was also a key theme for the panel discussion moderated by Clifford Goodman, PhD, Senior Vice President of The Lewin Group and featuring Jenny Ahlstrom, Founder, CrowdCare Foundation and Multiple Myeloma Patient; Clay Alspach, JD, Principal, Leavitt Partners; Anobel Odisho, MD, MPH, Urologist, UCSF Helen Diller Family Comprehensive Cancer Center and Clinical Informatics Lead, UCSF Center for Digital Health Innovation; and Susan Stiles, MHA, MBA, FACHE, Executive, Oncology Business Unit, Cerner Corporation.

“Today, it takes an extraordinary effort for patients to access their records at multiple facilities in order to share it so it is correlative with other patients and relevant for research,” explained Ahlstrom. “Our current process and lack of data makes it difficult for patients to make life and death decisions around their care. Easing this process will enable the generation of faster new hypotheses from the research community which will in turn save patient lives. Many forget that patients are not just data sets, they can and should be active participants in this interoperability process.” 

The speakers examined the impact of the ongoing COVID-19 pandemic on medicine as a whole and cancer care in particular. They discussed how the 21st Century Cures Act laid groundwork that can be helpful in the global fight against the pandemic, and also looked at new lessons to be taken from the fight against COVID-19 and applied toward improving cancer care in the future.

“The dramatic and rapid uptake of telehealth has shown great promise for patient care but also exposed deficiencies in the existing software solutions for providing remote care,” said Dr. Odisho. “Providers have been able to transition to video visits and telehealth, but the field is immature and there are significant opportunities to improve the quality of care and efficiency of care delivery. Now that the Cures Act rule has been finalized, allowing patients to access their own data, provisions against information blocking, and clear timelines, health information technology (HIT) developers are empowered to develop solutions for improving remote patient care—such as video visits, automated workflows, and asynchronous virtual care. We will have to keep a close on eye on utilization of information blocking exemptions to ensure they are having the intended effect and are not being exploited outside of the intended scope.”

The summit also included a presentation by Jeff Allen, PhD, President & CEO, Friends of Cancer Research and Ronald S. Walters, MD, MBA, MHA, MS, NCCN Board Chair & Breast Medical Oncologist, The University of Texas MD Anderson Cancer Center. Drs. Allen and Walters presented recommendations for future policy improvements according to an NCCN working group of multidisciplinary experts from across the country. The group’s recommendations include:

  • Provide robust, sustained, and predictable annual funding increases to guarantee continued clinical advancements and clinical trial success
  • Encourage increased interagency collaboration and communication to enhance the oncology product approval process and benefit future coverage processes
  • Establish parameters for the use of real-world data including patient reported outcomes, post-market analysis and the representation of diverse population groups to leverage the use of real-world evidence
  • Encourage and incentivize widespread patient participation in clinical trials to increase diverse study populations
  • Build upon the regulations of the Office of the National Coordinator for Health Information Technology to expand available standardized data elements in a manner that is actionable to the patient and the provider
  • Promote policies and reimbursement mechanisms that support interoperability and encourage the aggregation of patient data that will promote shared decision-making and increase understanding between patients, providers, and payers
  • Maintain and increase advancements made during the COVID-19 pandemic to enhance patient access to telehealth services and increase access to tumor boards to improve patient care

For more information and background on these policy recommendations, plus a look at upcoming NCCN Policy Summits, visit Join the conversation online with the hashtag #NCCNPolicy.

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About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so patients can live better lives. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) provide transparent, evidence-based, expert consensus recommendations for cancer treatment, prevention, and supportive services; they are the recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The NCCN Guidelines for Patients® provide expert cancer treatment information to inform and empower patients and caregivers, through support from the NCCN Foundation®. NCCN also advances continuing education, global initiatives, policy, and research collaboration and publication in oncology. Visit for more information and follow NCCN on Facebook @NCCNorg, Instagram @NCCNorg, and Twitter @NCCN.