Smart Patients, Smarter Trials

In our increasingly online world, it only makes sense that more and more people are turning to the Internet to find and share information about their health and wellness.  A 2012 Pew survey showed that 72% of Internet users have searched online for health information in the last year, and 35% of US adults admitted to going online specifically to try and diagnose a medical condition for either themselves or someone they knew¹. Of those online searches, the most popular queries were for information about a specific disease or medical problem, or a certain medical treatment or procedure².

The online space is ripe, then, for services like Smart Patients. Co-founded by Roni Zeiger, former Chief Health Strategist at Google, Smart Patients is an online community for cancer patients and caregivers to share information about treatments, clinical trials, and personal experiences. When presenting his TedMed 2013 talk³, Zeiger mentioned the idea that patients become “micro-experts” on their disease. The idea behind Smart Patients is to bring together all of those micro-experts under one roof, so to speak, so that they can share their knowledge not only with each other, but also with the scientific community in the hopes of furthering research on those disease states.

Enter OncoSec Medical, a biotech company with a focus on treatments for advanced-stage skin cancer. OncoSec has partnered with Smart Patients to create an online community for patients with Merkel cell carcinoma (MCC), an extremely rare and aggressive form of skin cancer. Punit Dhillon, CEO of OncoSec, told Applied Clinical Trials that he hopes to incorporate the information gleaned from the partnership into designing trials.

Dhillon said that he first learned about Smart Patients from a meeting with Zeiger at TedMed a few years ago, while the two were discussing Google’s work with the flu pandemic, and the nature of social tracking. There was a need, they agreed, for

“front line” information about illness and disease states, which is where Smart Patients comes in.

The nature of the platform is appealing to Dhillon because it provides a specific launch pad from which to curate the community, as opposed to general platforms like Facebook and Twitter. “We have a gap with certain diseases we’re going after,” Dhillon explained. With limited options and no voice, the MCC community, for example, has “hardly any visibility and hardly any new treatment.” Dhillon hopes that Smart Patients will help change that.

He adds that there are “a huge number of byproducts” to tap into that arise from establishing the community. Bringing together people who are dealing with the same rare form of skin cancer allows for specific and targeted information, including demographics and locations of patients.

Because this particular avenue of collecting information provides insights from the patient community, Dhillon hopes that it will help OncoSec shape their trial design so that it best suits the needs of the patients. Long term, Dhillon hopes that the partnership will assist OncoSec in developing a treatment solution that helps patients have better quality of life, and live longer with their disease.

References:

¹Susannah Fox, Maeve Duggan, “Health 2013” Pew Internet and American Life Project 2013, January, 15, 2013. http://www.pewinternet.org/Reports/2013/Health-online/Summary-of-Findings.aspx

² Susannah Fox, Maeve Duggan, “Health 2013” Pew Internet and American Life Project 2013, January, 15, 2013. http://www.pewinternet.org/Reports/2013/Health-online/Part-One/Section-5.aspx

³Roni Zeiger, “Who is the real medical expert?” TedMed 2013.  http://www.tedmed.com/talks/show?id=64613