Data sharing is one of the “next big things” in cancer research. This essential extension of laboratory and clinical research will rely on cancer patients voluntarily sharing their private health information. Unfortunately, we aren’t making it easy or attractive for them to do this.
Researchers seek patients’ DNA samples, detailed medical histories, and honest assessments of daily lifestyle habits to advance the study of disease. These data are already being collected when individuals are diagnosed with cancer and treated for it, but largely aren’t being shared with researchers.
The National Institutes of Health has announced plans to dole out $55 million in grants over five years to enlist 1 million volunteers to allow access to their clinical data from electronic health records, use mobile health devices and apps to track activity in real time, and submit their genetic and biological information through blood and urine tests.
Few patients know that this information is valuable to the cancer research community, so someone needs to ask them to contribute their data. That someone is usually a physician like me. I just wish we had more incentives to offer cancer patients to join this effort.
Some individuals don’t need any incentive. They donate their data because they feel a sense of benevolence by contributing to the greater good. Others rightfully worry about the hassle of participating, or privacy, and may need some persuasion.
The NIH is billing its million-person effort as an opportunity for patient-volunteers to be partners in this research. Participants will have ongoing input into study design and implementation, says the NIH, as well as access to individual and aggregated study results.
I don’t think that’s much of an incentive. Patients who take part in a study should have the right to access and evaluate the results whether or not they contribute their health information to a repository. Researchers have long treated such access as a privilege and tried to exclude patients from seeing this information under the guise that it is incomplete or imperfect. But just as physicians no longer control access to electronic health records, researchers should no longer determine who gets access to what study information and when.
Researchers, health care providers, and academicians need to actively court patients to contribute their data and be part of a movement that will help identify new and better cancer treatments. Here are some things I tell my patients who are on the fence about sharing their health information:
- You might personally benefit from the data that you and others share.
- This work will help other people diagnosed with cancer, just as the data from those who have participated in the past has helped improve your care.
- The health information you contribute will be protected by federal law (the Health Information Portability and Accountability Act) to which the NIH says it is adding extra privacy and security safeguards.
Patient participation in “big data” has contributed to many of the remarkable advancements in cancer treatment over the last decade that might otherwise have gone undiscovered. Take immunotherapy as an example. Never before has the oncology community witnessed such a rapid development in treatment. Clinical trials identified personalized treatments for previously deadly tumor types that improved survival with lower toxicity for some patients.
If we are going to seize this moment to make huge strides against cancer, those who matter most — patients — must be engaged in the work. The only database project worth our collective attention is one that is patient-focused, allows them to participate in knowledge and information sharing, and ensures that their private data are safe. Such a dataset for precision medicine promises to give researchers a better understanding of cancer and the ability to treat it based on individual differences in lifestyle, environment, and genetics.
That promise alone should help nudge cancer patients to be part of this work.
Maurie Markman, MD, is president of medicine and science at Cancer Treatment Centers of America.
How can I help. CTCA Goodyear
Good points, all. I’d just add that in order to assure the data contributions made and resulting data sets are managed in a patient-centric, participatory and protected way, I believe patient groups (not siloed institutions or companies) should own and maintain the data, funded by those who benefit most from it.