A Partnering for Cures panel featured leaders from diverse organizations that are each using social media in unique ways to create new data platforms and solve research problems. In discussing the impact of social media on research norms, they agreed that social media represents a powerful new source of data, but in order to properly harness the data, the research community needs to become more comfortable collecting and probing the data from perspectives that may be unfamiliar.
Jon Fredrickson of Innocentive anecdotally pointed out that the community needs to develop an appreciation for “different angles of attack” to solve problems. Frederickson explained that in the world of crowd-sourcing investigations, a major hurdle for organizations when a member of the “crowd” solves the problem is actually accepting the solution: “The personal issue that the [organization] has to face is when I get the answer and that person doesn’t look like me, wasn’t trained like me, and doesn’t have gravitas that I have, can I accept the fact that that answer really does solve my problem.”
Moderator Matthew Herper of Forbes Magazine pointed out that while social media can generate a lot of data, the quality of the data can sometimes be called into question.
Sally Okun of PatientsLikeMe explained that there is a story behind each piece of data, whether it is structured or unstructured. PatientsLikeMe uses a clinical networking platform to more accurately assess and report patient outcomes. Much of the data that are collected is unstructured, as their system allows patients to relay their experiences in their own words. The data are then curated and coded into clinical terms, and validated by sharing the clinical interpretation with patients to ensure accuracy. Okun explained that they have found this type of assessment more accurate than the conventional method of clinically assessing patient-reported outcomes through questionnaires.
Elizabeth Iorns explained how her organization, Science Exchange, creates an online marketplace for scientific facilities and services provided by universities and companies around the world, which otherwise may prove to be difficult to find or access. Using a fee for service model to create an online exchange for science experiments, Science Exchange provides a new way to ensure research reproducibility and validation of findings. Iorns noted that nearly 70 percent of data produced by academic labs cannot be reproduced independently, which may be a key reason that many drugs fail. One of the reasons that this problem exists, according to Iorns, is that the incentive system is geared toward quantity, not quality: “There are not stringent checks and balances in place to ensure that the data have been validated and are identified as correct.” Iorns explained that the quality of data generated from Science Exchange is generally higher, not only because of the validation process, but also because single investigator bias is removed, and it creates an overall auditing process. “These audited results are more likely to be the ones that lead to a cure,” she stated.
All panelists agreed that the norms as they relate to social media and research are indeed changing; however, the rate of change is not evenly distributed. John Wilbanks of the Kauffman Foundation said, “The rate at which norms evolve compared to the rate at which technology develops, which is so much faster, means that we are going to have a weird 5-10 years ahead of us, and we don’t have a culture right now that is tolerant of weird interstitial periods where we have capacity and not norms.” Wilbanks explained that the immediate danger to be most aware of is knee-jerk regulation and legislation in response to these changes. He warned that if we do not plan strategically, it will be very difficult to survive this period and really harness the power of social media data.
Greg Simon of Poliwogg added to the discussion by talking about the power of the crowd in funding high-risk, high-reward research, and the tools that allow for this type of distributed funding model. He explained that although it is becoming increasingly clear in other industries that there is value in the thoughts and actions of all people, not just private investors, and entire industries are driven by assessment of these thoughts and actions, the financial community has been slower to catch on to the power of creating and evaluating social platforms to drive new innovation.
In March 2012, Congress passed the U.S. JOBS Act, which allows non-accredited investors access to private equity investments (crowdfunding). Simon explained, “If you believe there is wisdom in the crowd when it comes to finding and shaping new health solutions, shouldn’t we give [the crowd] the opportunity to help shape the future by picking the winner [financially]?”
In closing, the panelists discussed some ideas for incorporating checks and balances into the use of social media across research channels, agreeing that rating structures will need to be put into place to allow the research community to develop confidence in the platforms themselves, as well as the data they generate.
