Since its establishment in 2000, the Michael J. Fox Foundation has become one of America’s best known health advocacy organizations. By leveraging Fox’s considerable name recognition and public goodwill into funding for experimental Parkinson’s Disease research, the organization has made inroads towards subsidizing cutting-edge treatments.
One of the Fox Foundation’s newest tools is the Fox Trial Finder, which uses algorithms similar to those on Internet dating sites to match Parkinson’s patients and healthy control groups with clinical trials.
“I’m totally an optimist. My big hope is for willingness to engage. In my own experience, even after being educated there was only a portion of the patient community that raised up their hands [to participate in trials]," says Co-Founder Debi Brooks. "Patients have little insight into what role they can be playing in research and what the need for them is; part of the genesis of the Trial Finder was to really go hand-in-hand with long-term Parkinson’s education efforts to help patients find resources that can make help easy.”
The Fox Trial Finder is one of the most ambitious attempts ever to fill medical research trials. Nearly 85% of all trials begin late due to difficulties recruiting enough participants, according to data provided by the Fox Foundation; the trial finder is an attempt to reverse that process. Medical research trials have traditionally relied on a word-of-mouth network whose hubs are experts in the field. But a network is only as good as its hubs; many clinical trials fail to attract needed participants because potential volunteers are unaware of their existence. Creating a smart database that automatically matches volunteers to trials, says Brooks, is a way of sidestepping that logistical challenge.
The trial finder originated during a clinical trial that the foundation was sponsoring to discover a biomarker that measures the progression of Parkinson’s disease. According to a foundation representative, the idea of the Trial Finder came out of due diligence of what would be needed to enroll volunteers into the trial. The Fox Foundation opted to use the recruitment infrastructure used for that particular clinical trial for other projects as well.
A tech legend also has a surprising role at the Fox Foundation--Google Co-Founder Sergey Brin. Brin’s mother, Genia, was diagnosed with Parkinson’s in the 1990s. Both Brin and his wife, 23andMe Co-Founder Anne Wojcicki, are avid supporters of Parkinson’s research and of the organization. In early 2011, the couple promised to match up $50 million in new and increased gifts to the Fox Foundation; the organization also receives a Google grant of $40,000 a month.
Fox himself says that the site helps drive the foundation toward its goals: “Scientific research is our main focus; we don’t deal with direct medical advice but rather with funding and facilitating research. The Fox Trial Finder helps patients find out what trials are happening near them, and we hook them up with doctors and researchers all over the country."
More than 12,000 volunteers have already signed up for the Fox Trial Finder. Volunteers have the option of filling out a questionnaire that takes approximately 15 minutes to complete, or of conducting a less precise quick search. Much like similar sites for dating or job hunting, users can save their profiles and receive email notification when matching studies open up. Once a study is available, the MJFF uses the trial finder to facilitate a connection between researchers and volunteers. Potential trial participants’ information is anonymous, and a secure two-way messaging system is available for communication between volunteers and researchers.
Once a study is available, MJFF uses Fox Trial Finder to facilitate a connection between researchers and volunteers. Users have the option to enter preferences for trials they may be interested in, and research coordinators can also use Fox Trial Finder to find eligible participants for their studies. Potential trial participants’ information is anonymous, and Fox Trial Finder has secure, two-way messaging between volunteers and researchers.
Fox Foundation Chief Digital Officer Laxmi Wordham told Co.Exist that the short questionnaire was made to make sign-up as easy as possible, and that the algorithms the service uses are designed to make matches with minimal profile information.
Health and identifying personal information entered by potential trial participants onto the site is kept private; information is not shared with any other databases operated by the MJFF. However, the Fox Foundation has stated that they want to use aggregate data sets, stripped of personal information, obtained through the Trial Finder for research purposes in the future.
Although the MJFF is the leading Parkinson’s-related organization running a trial matcher, other large medical nonprofits and advocacy groups have launched similar algorithm-based clinical trial matching services. Among others, the National Institutes of Health runs an Alzheimer’s Trial Finder, and the American Cancer Society runs the Clinical Trials Matching Service in collaboration with private firm Eviti. Due to the ongoing decrease in cost for setting up trial matching systems, more nonprofits are expected to adopt the Fox Foundation’s approach in coming years.