New law will aid RI cancer researchers, patients
STATE HOUSE — A new law sponsored by Deputy Majority Whip Mia A. Ackerman and Sen. Samuel D. Zurier will allow patients and medical researchers access to vital national data and research.
“Rhode Island patients deserve world class cancer treatments and our researchers need access to national data to provide it to them. This bill won’t just bring us up to speed with national medical research, it will allow us to be at the forefront,” said Representative Ackerman (D-Dist. 45, Cumberland, Lincoln). “I am proud to ensure that the scientists developing treatments for cancer patients in Rhode Island have access to every tool available in their fight.”
Said Senator Zurier (D-Dist. 3, Providence), “This legislation will advance public health in an important way by streamlining the use of medical data by the skilled researchers in Rhode Island working to develop treatments for a variety of medical conditions, especially cancer. Researchers will still follow clear federal guidelines to keep patient data anonymized and private, while allowing them access to the large datasets they need to continue their research.”
Modern medical research, particularly cancer research, relies on researchers sharing large data sets of anonymized patient information to compare treatment effectiveness across different population groups. Federal law allows this data sharing, provided the data cannot be traced back to any individual, but Rhode Island law prevented this sharing, which locked out Rhode Island researchers from participating in this national data-sharing.
“The strict requirements in Rhode Island are disadvantaging the people of Rhode Island by stifling research activities,” said Dr. Wafik El-Deiry, director of the Legorreta Cancer Center at Brown University. “We have been falling years behind other states in doing needed research to provide better care for the people of Rhode Island. This is hurting our scientists and our patients.”
The legislation (2024-H 7301B, 2024-S 2394A), which was signed into law Monday, amends Rhode Island law to allow the sharing of anonymized medical research data in the same manner allowed under federal law and most other states. In nearly all cases, patient consent will still be required, but certain research that poses minimal risk would be allowed to proceed under a waiver of consent approved by the internal review board, consistent with federal law.
Rhode Island has unusually high rates for many types of cancer. Researchers like El-Deiry believe access to national data may help them understand why these high rates are occurring, in addition to helping them develop more effective treatments.
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