A new online community for cancer patients seeks to build on the pioneering success of the Association of Cancer Online Resources (ACOR) while making clinical trials more accessible and attractive to patients.
Smart Patients (smartpatients.com) was launched earlier this year by Gilles Frydman, who founded ACOR nearly two decades ago, and Roni Zeiger, MD, an internist and the former chief health strategist at Google. Their goal is to facilitate more conversations between more cancer patients, allowing patients, family members, oncologists, researchers, and drugmakers to benefit from the information exchanged.
Unlike ACOR, which provides listservs for patients with a diagnosis of, say, melanoma or intestinal cancer, Smart Patients has a search engine that allows a patient with a certain genetic mutation or therapy or side effect to find other patients with the same interest, regardless of their diagnosis.
“This new form of aggregation and cross-disease learning is going to be, we believe, a fundamental way for people to get information they couldn't get otherwise,” Frydman said.
He cited an early example of a mother whose child has kidney cancer with the Xp11.2 translocation: “In less than 10 days [on the Smart Patients site], she has already found another mother of a kid with this mutation, which is very, very rare.”
Input into Trials Design
Meanwhile, Smart Patients also seeks to improve clinical trials by giving patients a way to provide input into how trials are designed. Researchers and drug manufacturers are not allowed to use the site to promote trials or recruit patients; however, Smart Patients will survey specific patient groups on their behalf, and de-identified responses will be shared with biopharmaceutical companies.
“Some of our work involves getting feedback from patients about trials for which the design is not yet final,” Zeiger said. “The sponsor of the trial wants patient feedback about aspects of the trial that could be adjusted so that the trial can be more patient-friendly, and therefore, is easier to recruit into.”
Perspective from ePatient Dave
Dave deBronkart is one of many cancer patients who found help from ACOR after a cancer diagnosis. Through his experience, he has noted, he became so convinced of the importance that patients be proactively engaged in their treatment and recovery, that he re-invented himself as “e-Patient Dave,” the foremost proponent of patient engagement (OT, 10/25/12 issue).
Diagnosed with Stage IV, Grade 4 renal cell carcinoma, he found information on ACOR's kidney cancer listserv that helped him prepare for and tolerate high-dose interleukin-2.
“My oncologist, David McDermott, says the info I got from ACOR about side effects may have contributed to my survival,” he said. “I call that value!”
But because ACOR's listserv technology does not maintain an archive that can be easily searched or browsed, its usefulness is limited.
“This meant that any ordinary patient's web skills were simply not useful on ACOR,” deBronkart said. “And that in turn meant that all of the community value depended on being handed down from person to person and depended on continuous active participation by people who ‘know the knowledge base.’”
More than one million cancer patients have used ACOR listservs since the organization was founded in 1995, but Frydman has long been frustrated that more cancer patients do not share information online on ACOR or other patient sites. At its zenith, ACOR had about 50,000 listserv participants, which is a small fraction of patients diagnosed with cancer each year in the U.S., not to mention the number of international cancer patients and survivors here and abroad.
“The number of people who should have access to this kind of free resource is much bigger than the combined number of people who are using the various services,” he said. “There is really big room for growth.”
Karen Hammelef, DNP, Director of the Patient and Family Support Services at the University of Michigan Comprehensive Cancer Center, says the most common request from patients is for peer support.
“They want to speak to somebody who has had their disease and the same treatment methods that they have, and are having a similar cancer experience so they can learn from them. And that's not easy to find locally.”
What It Means for Oncologists
Hammelef said that what she finds equally important, however, is the repository of information potentially useful for clinicians that is being created while patients share among themselves.
“That information is something we don't have as cancer providers—the real patient experience when they are at home after they have left our offices and what they are really struggling with in managing their treatment and their cancer experience. That information is invaluable, and I would love to see how that plays out in the future and how we can all use that.”
Zeiger said that clinicians are welcome to participate in Smart Patients conversations as individuals, but not in the role of marketer or researcher. The site is monitored.
What It Means for Drug Development
Two not-for-profit cancer-related organizations—the Bonnie J. Addario Lung Cancer Foundation and Cancer Commons—have partnered with Smart Patients to help provide their patients with online community support. Zeiger, emphasizes, however, that the partner organizations cannot advertise on the site or contact patients who use it.
In addition to helping biopharmaceutical companies learn what patients want to see in clinical trials, Smart Patients wants to make it easier for patients to find appropriate trials. The site offers a user-friendly search engine for clinical trials that uses the same database as clinicaltrials.gov.
“Even something as simple as more public discussion among informed patients and clinicians about the science can improve the quality and awareness of trials that can help move science faster,” Zeiger said. “We think that cancer patients and caregivers represent an untapped resource in the scientific process, and that is what we are trying to support.”