This year 1.6 million people will be diagnosed with cancer, and fewer than 3 percent of them will take part in a clinical trial to study the best ways to treat this massive social ill.
Yet the internet teems with citizen science projects and stories about regular people who are taking medical research into their own hands.
Patients can use slick tools from Apple and mobile apps from digital health companies in the Twin Cities and elsewhere to take part in transparent research. Families affected by type 1 diabetes are particularly active, rallying behind the hashtag #WeAreNotWaiting and publishing instructions for do-it-yourself devices, including "artificial pancreas" systems built and tested by 177 people worldwide.
"I'm here to tell you that the experts we've been missing in medical science are the patients," said New York-based genetic science researcher Jason Bobe, who spoke during a panel discussion Tuesday at the University of Minnesota. "And the future of biomedical science and the advance of biomedical science relies on better engaging them."
The U's multidisciplinary Consortium on Law and Values in Health, Environment and the Life Sciences held Tuesday's event, part of the Deinard Memorial Lecture series, to generate thought and discussion about what it called "the patient-led revolution in health care."
Some experts say medical research is being "transformed" by the explosion of social media, wearable fitness devices and patient advocacy networks, but the picture presented at Tuesday's event was of two scientific communities running in tandem. One is run by and for patients, focused on their immediate needs, while the other is composed of big companies and research groups whose bedside manner and profit motives may be chilling participation rates.
Barbara Evans, a Houston professor and expert in bioethics, said the current system of bioethics in medical research, which was set up to protect patients, has resulted in patients having almost no say in how clinical research studies are designed or how their personal information is used. The only input they have is whether to consent to allow research to be done on them.
Patients in some cases are saying, "We want some control over the outputs of our research. We want to be able to perhaps not have our data used in research that's going to make exorbitantly priced drugs. We want the price of drugs that use our data to be reasonably priced. And we want an outlet to specify some of the terms and conditions," Evans said.
Online research and data-sharing platforms like Nightscout, for type 1 diabetes patients, and Open Humans, for a variety of health-related projects, give research participants new outlets to do research without engaging the traditional medical research system.
Individuals have been able to design their own medical devices that go on to work for other people as well. British engineer Tal Golesworthy was called "the engineer who fixed his own heart" by the BBC after he invented a device to treat a heart problem associated with his disease, Marfan syndrome.
"It is truly inspiring to see what patients can do for themselves, and for others. That is the promise of citizen science. But there are also perils," said Kingshuk Sinha, a professor at the U's Carlson School of Management.
Sinha cited the example of Japan's "patent king" Yoshiro Nakamatsu, known as Dr. NakaMats in the press, who has raised concerns among researchers worldwide with the announcement that Nakamatsu plans to self-treat his cancer without radiation, using foods and teas said to boost cancer immunity, among other nontraditional remedies.
But Sinha noted that citizen-driven science doesn't have to be seen as an alternative to traditional science. "It's not an either/or," he said.
Bobe noted that the Discovery Channel show "MythBusters" managed to attract millions of viewers, and yet every episode was essentially about the scientific method. But unlike in MythBusters, people in traditional clinical research are often not treated in ways that engage them, including showing them the study's final results even when the outcome may be fuzzy.
"If there is a TV show that is able to get millions of people following it that is about the scientific method," he said, "then I think there's hope for the research environment to maybe start thinking a little more carefully about engaging people in ways that are interesting, around how science is put together, and the process of how medical knowledge is made, and how hard that is."