NCI director: Quality information essential in 'virtuous cycle' of scientific progress
Key takeaways:
- Health care information should be accessible, understandable and inclusive.
- Several NCI initiatives and services are designed to improve the clear dissemination of health care information.
People with cancer should receive “current, accurate and digestible” information that allows them to be “active stakeholders” in their cancer journey, according to NCI Director W. Kimryn Rathmell, MD, PhD, MMHC.
Rathmell delivered the keynote address last month at National Comprehensive Cancer Network’s Patient Advocacy Summit, which focused on practice and policy approaches to share evidence-based information with patients.
Rathmell discussed the interconnectedness of patient trust in research and the development of evidence-based data that accurately reflects the real-world patient population.
“It’s a virtuous cycle in the best circumstances,” Rathmell said. “Trust engenders better data and better engagement in research, which builds the evidence base that gives us better advances and better care for patients.
“NCI is a cancer research organization, and then there’s cancer care,” Rathmell added. “There are times when it can seem like these are two separate, siloed pieces, but they’re not. They tie together very effectively and are at their most powerful when there’s a blurring between the two spaces.”
The power of collaboration
Rathmell illustrated the power of knowledge sharing and collaboration by sharing a story from early in her career as a kidney cancer specialist.
Rathmell was treating an 18-year-old Black man who had been referred to her due to postoperative complications from removal of a large tumor on his kidney.
Rathmell and her colleagues learned that the patient’s father had died of HIV acquired from a transfusion for sickle cell disease.
“That meant that this young man had sickle cell trait, which meant he fell into the category of a very rare disease that I had never seen before called renal medullary carcinoma,” Rathmell said. “There was very little literature on this disease. Even as a kidney cancer specialist, I didn’t have enough information.”
Rathmell consulting and collaborated with colleagues at NCI, The University of Texas MD Anderson Cancer Center and Cleveland Clinic to develop a treatment cocktail for the young man, who had a life expectancy of about 3 months.
The man ended up living for about a year to a year and a half — enough time to graduate from high school, but not nearly enough to fulfill his potential or live a full life.
“As he was moving into hospice, I visited him in his home, and his mother really unloaded on me in a way you don’t often do in the clinic,” Rathmell said. “She gave me a sense of all the ways that he had fallen through the cracks, all the ways that information had been missing for them.”
Rathmell took the mother’s comments to heart and authored a paper on a case series of three patients with renal medullary carcinoma. It was picked up by a social media director whose brother had died of the disease, and this exposure resulted in Rathmell being connected to a larger community of experts in the disease.
“We had a meeting — we got the 20 people who knew about this cancer to have a think tank,” she said. “It eventually became an alliance, an international group, and today, the Renal Medullary Council Research Foundation exists. Today, we understand this cancer in ways we never have before.”
‘We need to work together’
When Rathmell began her medical career, there was a much more paternalistic model of medical information sharing in place.
“It was all very top down,” she said, describing the approach as “doctor knows best, scientists know what is needed and we’ll just tell you how it is.”
Now, she said, the approach is much more integrated.
Rathmell highlighted NCI initiatives designed to improve health care information dissemination for clinicians, patients and the public.
The NCI’s Physician Data Query (PDQ) online database offers comprehensive, evidence-based cancer information to health professionals, patients, advocates and consumers. PDQ provides accurate, up-to-date information summaries designed to improve and guide evidence-based cancer care.
NCI’s Cancer Information Service (CIS) tool for patients provides useful information for patients about cancer, as well as an option for free live telephone chats. One particularly popular feature of CIS is its extensive dictionary of cancer terminology.
“That is our biggest page, and it shouldn’t be surprising. We work in a field with a lot of terminology that we take for granted,” Rathmell said. “Even when we try to speak very clearly, we use jargon that most people don’t understand.”
CIS includes information in Spanish, and NCI officials are looking into ways to leverage AI to help visitors find information more quickly.
Rathmell also discussed the importance of making clinical trial information more accessible and understandable, adding that projects like the Pragmatica-Lung Study — which has a unique design that aims to optimize enrollment — likely will serve as models for future trial accessibility.
“We’re very excited about this study, and we want patients to know about this, too,” she said. “We want people to know we are doing studies that streamline eligibility and make studies relevant to community practices, and that can answer questions very quickly.”
TrialGPT is another project that aims to use AI to more efficiently match patients to appropriate clinical trials.
The initial pilot of TrialGPT was “very interesting and very successful,” Rathmell said.
Ideally, patients could use this type of AI in the same way they might use it when hoping to try a new restaurant.
“This is something we should be able to do with a loved one — to say, ‘This is my set of conditions, this is my geography and this is my time frame’ — and find the available trials and how to get to them,” she said. “That’s not an easy question to ask, either on ClinicalTrials.gov or on Google, but it’s something we can use AI for.”
Rathmell said NCI’s primary goal is to make it easier for people to find specific information about cancer, utilize a data-informed approach to create a helpful user experience, and present information with a voice and tone that is empathetic, authoritative and trustworthy.
“Providing quality information is a necessary early step to earning patient trust,” Rathmell said. “Building trust in cancer research contributes to scientific progress, which leads to improved outcomes. NCI and NCCN and everyone represented here contribute to this complex information landscape, and we need to work together to meet the needs of people with cancer.”
Reference:
Rathmell WK. Engage every person: The importance of quality information for building trust in cancer research. Presented at: NCCN Patient Advocacy Summit on Improving Access to Accurate Health Information; Dec. 6, 2024; Washington, D.C. (hybrid).
Collapse
Webinars