Learn about the crowdsourcing resources available to patients, health care practitioners, and medical device designers seeking to gather data and contribute to solving medical challenges.
Online crowdsourcing communities are a game changer. These platforms allow anyone to appeal to the entire connected world for support or participation. They get many of us to participate--Kickstarter processed just shy of $500 million dollars in 2014. Most interesting, at least to me, are platforms for crowdsourcing information. These make up the next generation of online forums, ranging from chat forums to open source hardware development.
When it comes to medical information, open settings are probably not a wise choice for reliability, but there is a slew of other platforms designed to encourage experienced contributors to respond to appeals for help. This article will discuss a few interesting crowdsourcing resources available to patients, health care practitioners, and medical device designers seeking to gather data and contribute to solving medical challenges.
Medical Diagnostics for the Patient
Several online platforms allow anyone in the world to login and crowdsource medical advice. As discussed, Facebook probably isn't a great place to start--unless you want to organize a stop at the pub on your way to the hospital. Other platforms, such as CrowdMed or QuestionDoctors.com, allow you to post your problem to their website and offer a reward or get responses for free, respectively (both sites only allows certain people to respond to these 'cases'). Patientslikeme is a website for crowdsourcing health management information to be used by a patient after they have received their diagnosis.
Aggregating Data Passively
It would be remiss not to briefly touch on medical information aggregators, which are not so much a form of crowdsourcing as they are crowd-watching. Google Flu Trends was one of the first platforms to base medical trends on general web searches. Though it shut down due to some accuracy issues, others, such as the World Health Organization-backed GPHIN or Sickweather, have since popped up in its place. Though Sickweather has an accuracy that is difficult to understand, it's interesting in its use of social media keywords and third-party information (including from FDA devices) to construct maps. All this information is designed to help users make informed decisions based on current trends.
Healthcare Practioner Resources
Physicians have long turned to online resources for advice, so it's no surprise that there are a number of online platforms for doctors to crowdsource case-specific information. Sermo is (in their own words) "a safe and secure place for doctors to talk freely and openly," and is free for physicians to use. Similarly, QuantiaMD is another free platform for medical practitioners. Both (presumably) make revenue by selling the anonymized medical data. Though the ethics of this may be questionable, the impact and influence are undeniable--they host hundreds of thousands of users across the globe and contribute to resolving thousands and thousands of cases per year.
Medical Information for Medical Device Developers
Besides using or buying information from the above sources, there are several ways medical device developers can crowdsource medical information for the development of their own products. One is the wellness first model, where you can use your device to crowdsource your own information before it's an approved medical device.
Arguably even more clever than the wellness first model is to sell a device before it even exists by using a crowdfunding website (such as Medstartr, which is specifically for medical devices). In this case, your backers pay up front for a non-medical device prototype they get down the road, which you can then use to collect feedback. Of course, there are some regulatory landmines with an approach like this, and any data is hardly impartial--the users have a vested interest in its success--but there are many advantages.
Last but not least, another method to crowdsource data for your device development is simply to ask, like this group at MIT who installed cameras in 18 participants' homes to measure their walking gait. The level of control for these types of trials is likely too lax for dependable clinical data, but crowdsourced studies are growing in number and many of them are focused on the viability of crowdsourcing itself.
Crowdsourcing Medical Device Design
If crowdsourcing patient information for your medical device isn't quite enough, you can even find resources to design parts of your product for you. Crowdsourced contract work is more efficient than ever with websites like freelancer, which post classified-style ads for a variety of jobs. Open source software for medical devices is already here, mainly for EMR applications but also specifically for medical devices (for example, Glucosio is a project to develop open source glucose management software) which tend to follow IEC 82304 guidelines. Open source hardware, which is designed to be available for crowdsourced upgrades, updates, and modifications, is also gaining traction with a number of notable projects, such as an ECG and a variety of prosthetics. Of course, all of this is only a good idea if you can follow regulatory standards on quality, which for FDA includes the need for employee(s) to have a familiarity with all parts of the design, be qualified appropriately, undertake effective design reviews, and provide sufficient evidence of proper testing before a submission.
How Far Can Crowdsourcing Take You?
Imagine that you're a medical device designer and a doctor comes to you with an idea for a new product. He or she has a patient without a firm diagnosis, and using a crowdsourcing diagnostics community they've discovered many people suffer from the same undiagnosed issue. The doctor's idea for a new medical device is intended to treat the symptoms of this ailment, and so the development of a new device begins. The physician personally funds a first proof-of-principle phase to flush out the core technology and concept and they can share the patented design with other doctors around the world for feedback.
Speed to market isn't a major concern, so you turn to crowdfunding to kick off your first round of investments. There are many people who suffer from the same symptoms as the original patient, so the crowdfunding is successful enough to support a first prototype build. A few good contract designers and regulatory experts can be found online who do most of the prototype development, and for the rest you rely on good old-fashioned elbow grease to bring it all together. It's not polished, but the prototype is good enough to send to your crowdfunding backers (assuming it's safe to use and ethical to test), who are asked to use the device and provide feedback and data. From here the program has legs, and enough history, information, and momentum to try to raise another round of funding and dive into the final design iteration using a more traditional development team.
Compared to traditional methods, this approach for an early prototype would be slower and have a sparser development team, but would have the distinct advantages of potentially lower cost up front, good opportunities for early funding, distinct opportunities for peer review, and widespread user and key opinion leader input early on. This approach would also create a group of relevant people with a vested interest in your project throughout its lifetime.
A New Standard?
Crowdsourcing platforms are a fantastic resource to gain access to large groups of people who may have unique knowledge, varied experiences, and time or motivation to contribute to building your input pyramid. Though it's too early to tell if these platforms will have the consistency, accuracy, or horsepower to get things done more effectively than the status quo, they do seem to offer promising alternatives to patients, physicians, medical device designers, and medical product developers. We'll see more and more examples of medical devices that leverage these platforms for their programs in the coming years, which will help provide a positive foundation to--or possible deterrence against--their use.
Nigel Syrotuck is a mechanical engineer at StarFish Medical, a medical device design company headquartered in Victoria, British Columbia.
[Top image courtesy of GERALT/PIXABAY; Headshot courtesy of STARFISH MEDICAL]