Is Silicon Valley About to Democratize Academic Health Research?
#ResearchTech: An emerging group of venture backed tech companies are disrupting a $100 billion dollar sector and improving our lives with faster, and cheaper scientific evidence.
We’ve all seen venture-backed tech companies eliminate barriers and transform our culture. Kickstarter allows anyone to support creative projects, not just wealthy benefactors. Blogging tools, YouTube, and Instagram allows anyone with a voice to become respected journalists and reach celebrity status without the traditional gatekeepers.
The same thing is about to happen to the world of human subjects research. This is the kind of research that used to only be possible at big academic institutions, government agencies, and pharmaceutical companies. The studies help determine what medical treatments work. They determine if social programs have a positive impact. They unlock the keys to what keeps us personally healthy and our society strong.
I started ProofPilot because I saw an opportunity to improve the way research studies were done. We started in the world of academia, and then realized there was a huge demand for people who had never conducted a study before. They wanted to show evidence their work had an impact, their treatments were safe, and they were spending their money wisely. Our goal is to make it as easy for someone to create a research study as it is to write a blog post. The PhD just happens to be optional.
We certainly aren’t the only venture backed tech company that sees an opportunity in the research world. One organization, the National Institutes of Health, pumps more than $18 billion a year into the space. Add market research, hospitals, pharmaceutical trials, education, body hacking, social service agencies, local governments, and the research market is easily in the hundreds of billions.
Like ProofPilot, each of these tech companies, each in their own way, are tackling the issues faced by human subjects research with the same innovative thinking as venture-backed companies have brought to financial services, media, and retail commerce. These companies make tools and techniques previously available only to academics — accessible to the masses.
Elimination of barriers to research, with the appropriate controls, will keep unverified claims in check, contribute to test accepted assumptions, improve understandings and create health breakthroughs.
Eliminating the Funding Barrier. What researcher hasn’t complained about the lack of funding? NIH R01 Award rates have dropped by 40 percent since 2008 due to a significant increase in the number of applications. For those studies that do get an award, audits suggest they are still severely underfunded.
Experiment.com takes the same business model that helped creative and technical founders realize their dreams on Kickstarter and IndieGoGo to the research world. Experiment.com claims more than 66,000 contributors have funded almost 700 research studies at various academic institutions across the U.S. Approximately 47 percent of studies listed on Experiment.com are successfully funded — a rate far higher than an NIH research proposal.
High tech lab tests for the consumer. In most states, you can order your own lab tests for cholesterol, HIV and a host of other biomarkers. But, genetics testing, an area with significant promise in unlocking the secrets of our DNA remained prohibitively expensive.
23andMe not only brings the price of DNA testing down to under $200, but you can do it through the mail, no doctors visits or blood draws required. 23andMe has now genotyped more than 1,000,000 individuals around the world. That data has helped uncover hundreds of genetic links to traits, including a massive crowdsourced depression study that provides the first clues linking genetics and depression.
Making it easy to share data. We live in an environment with health data all around us. It exists in our phones and connected health devices. Our doctors or hospitals keep our electronic medical records. Prior research studies keep our data secure for years of analysis. But all this data is disconnected. What breakthroughs could we discover if participants in studies could elect to share data from disparate sources in the name of science?
Instead of navigating complex bureaucracies to get access to data, OpenHumans allows participants to create an account, and share data with the studies and organizations they choose. The platform supports data sources from large traditional research studies like the Harvard Personal Genome Project and innovative studies like the American Gut Project. Users can augment that data with consumer sources like RunKeeper, Jawbone, and FitBit.
Disrupting Academic Publishing. While newspapers and magazine business models have withered against a complete democratization of media, academic publishing is both alive, and much hated by the academics who depend on it for their careers. Annual subscriptions to esteemed journals can cost thousands a year. For non-subscribers, articles exist behind expensive paywalls. Elsevier, one of the largest academic journal publishers, has a profit margin healthier than Apple.
Enter Academia.edu and Researchgate. The two firms take slightly different approaches to combining social networking and online manuscript publishing. Academia claims 46 million registered users, and nearly 20 million contributed articles. Academia’s open, community-based review process allows anyone to publish regardless of academic credentials and institutional affiliation.
It’s only a matter of time before even more innovative startups enter this growing and lucrative market. Inevitably, there will be some companies that stumble from the complexity and regulatory requirements. But, the possibilities for improved knowledge and meaningful breakthroughs are massive.