Why Social Media Alone Can’t Save Clinical Research
Facebook has already disrupted clinical trials — but we shouldn’t stop there.
Social media has upended everything, from the way we do politics to how we find love. On a broader level, its disruptive influence can be found in the emerging business models, industries and online communities that could not have existed just a couple decades ago. Only recently have we discovered the power of social media to transform healthcare, especially when it comes to raising awareness regarding public health issues.
You’ve probably heard about hashtag-driven health campaigns such as the Ice Bucket Challenge for ALS or Movember for men’s health issues. Much less is known about social media’s revolutionary potential to spark off a new age of clinical research.
User-Centric Social Media → Patient-Centric Healthcare
When it comes to twenty-first century patient care, the “social media effect” is indisputable. New players are using the Internet to find innovative ways to engage patients and collaborate with other members of our diverse healthcare ecosystem. Some experts have even started to call this new patient-centric, social media-driven era Health 2.0.
Apart from telehealth apps that provide patients with remote consultation from licensed physicians, Health 2.0 also encompasses the growing role of the Internet in clinical research. For a long time, medical research lagged behind other data-driven industries when it came to technological innovation. Clinical trials continue to suffer from dismal participation rates due to a variety of barriers such as lack of awareness. The resulting dearth of participants can negatively impact the quality of the study data, as well as prevent patients from accessing potentially viable treatments.
Social networks like Facebook and Twitter have presented researchers with an unprecedented recruitment opportunity. More and more are using targeted ads to reach out to potential participants and online patient communities. The Internet has further allowed patients to share their experiences of the trial and play an active role in experimental research. Forums and discussion websites (e.g. Reddit, Quora) make it possible for individuals to exchange information, seek support and learn about new trials or treatments.
However, it isn’t enough. In some cases, social media may actually threaten the validity of study data due to the amount of information shared over online forums (e.g. regarding entry criteria, speculation over who is a placebo recipient). Conversely, some participants might be wary of seeking online support regarding the trial due to unclear conditions listed in the informed consent form.
Social media is not enough — but we can do better.
Recruiting participants remains one of clinical research’s biggest problems. Social media can help make recruitment cheaper and more efficient by connecting researchers with a vast pool of patients online and engaging them throughout the process. But we still have a ways to go when it comes to improving privacy and expanding patient-centric care.
To start, we need a dedicated research platform.
Consider the success of PatientsLikeMe, an online platform that connects patients with similar health conditions. Since its founding in 2004, PatientsLikeMe has been committed to advancing medical research. Due to recent conflicts over their major Chinese investor, however, the popular website was acquired by UnitedHealth Group.
On the platform, users can easily access clinical trials and learn how to better treat or manage their conditions. Patients can then generate data pertaining to their experience of their disease, as well as contribute their data to scientific research. This can be a huge advantage for labs and pharmaceutical companies, who are hungry for crowdsourced patient-generated data.
However, there remains the highly contested issues of data privacy and exploitation. For instance, the data generated by PatientsLikeMe is made anonymous before being sold to drugmakers and other partners. However, there may still be ways to disclose the patient’s identity depending on the amount and type of information disclosed. We must also strive to protect sick individuals who are seeking support but may not be aware of how their data will be used. How can we harness the power of platforms without encouraging patient exploitation?
That is why we need secure & transparent blockchain technology.
With distributed ledger technology (DLT) like the blockchain, the need for trust becomes irrelevant. Patients can record sensitive information like health data in a way that is transparent, immutable and, most importantly, decentralized. Rather than handing their valuable data to a third party’s server, patients retain full control over who can access their data and can remove those permissions at any time.
In a post-Cambridge Analytica world, individuals are no longer willing to compromise on privacy. The future of health — and perhaps the Internet overall — is heading toward decentralization. Combined with the powerful network effects of an accessible, easy-to-use platform, blockchain could be the solution we need to transform clinical research for the better.
Sunny Lake is a blockchain-based platform for accelerated clinical research. Our goal is to create a secure, transparent, and collaborative clinical research ecosystem. To get in touch, contact: jcdespres@sunnylake.io
