Our Digital Future: Mass Empowerment Or Opium Of The Masses?
I’m sure it has something to do with whatever propelled me to delete my Facebook account recently, but I can’t help but envision two distinct futures we’re headed toward: one where shared health outcomes data are used to change the behavior of the masses for empowerment against disease progression; and another where massive amounts of social white noise is packaged for the handy glow of an iPhone to stupefy the masses with cat videos. They’re both shared data systems, yet one utilizes shared intelligence to empower, and the other? Well, it has a similar effect to opium (I’m guessing).
Empowerment through collective health intelligence
According to the National Institutes of Health, evidence-based medical practice has five components: defining a clinically relevant question, searching for the best evidence, appraising the quality of the evidence, applying the evidence to clinical practice, and evaluating the process. Evidence-based medicine (EBM) integrates the research evidence, clinician's expertise, and patient's preferences to guide clinical decision making. Most effective social platforms rally around a challenge or a question that begs a collective solution. Open-source software development, arguably the first effective large-scale social engagement project, is a case in point. And importantly, these systems evolve and add value over time as the data set of experience and outcomes grows. I like to think of its ultimate potential in terms of enabling the best of both the clinical and the experiential framework in medicine where one starts with a set of clinical findings and integrates personal experience with patient typing, preference, and outcomes. This is a naturally occurring process in the practice of medicine, regardless of EBM databases—but what digitization does is it enables collective intelligence, where each individual decision maker is able to see the actions and consequences of others.
Using social features on clinical trials management and EBM
I believe the greatest impact of social engagement platforms in healthcare will not be in marketing but in clinical trials and evidence-based medicine–oriented programs. And these areas are ripe for innovation. There is a growing need to drive down costs, provide tighter management, lower risks of poor outcomes such as discontinuation, etc, and share best practices across participating clinics. There are tremendous benefits in using social engagement to drive down discontinuation rates through effective and proactive management of side effects, and for setting up a transparent environment for participants, investigators, and risk-assessment teams. And it also helps that since it’s a non-promotional environment, U.S. Food and Drug Administration oversight is focused on the clinical structure of the trial rather than how it is managed from a systems perspective.
There is also the huge opportunity that is implicit in the promise of a unified electronic health records system across the country (which seems utopian right now, but will come to pass)—and that is visibility into the clinical decisions and outcomes of all patients across the country. And while that will capture physician-reported outcomes, there is another huge opportunity: capturing patient-reported quality of life impact and other nonclinical measures, such as geography, lifestyle, diet, psychosocial outlook, etc, thereby leading to a nonclinical data set of lifestyle and psychosocial markers. Recently, findings were presented in the Journal of Neurology, Neurosurgery, and Psychiatry that showed a high degree of correlation between the feeling of loneliness and dementia. In many chronic diseases, the link between marital status and adherence is widely observed. These are actionable insights that can affect health outcomes and social engagement tools can amplify them, if not help develop solutions that drive positive outcomes.
Rethinking social engagement: evolving from social platforms to embedded social features
If one were to play a word association game with social media, the first word uttered by most would be Facebook. While Facebook, Twitter, YouTube, and healthcare's Sermo, Quantia, and Within3 are what come to mind, these platforms have a high degree of white noise. But the real value of these platforms lies in impacting new behavior changes in how users interact with information. Increasingly, especially among digital natives, there is a low read-to-rate ratio—which means that for every click, the number of times they’re clicking to read something is about the same as the number of times they’re participating or disseminating content by sending to a friend, rating thumbs up or down, or commenting.
Development of new electronic management of clinical trials is in its infancy and yet offers powerful opportunities to build in social features that enable collectively filtered best practices for side effect management, patient-reported lifestyle triggers, and nonclinical inputs that correlate with outcomes. These could set up opportunities to shape not just how phase 3 and 4 clinical trials are conducted but how healthcare support systems could be customized to adapt to lifestyle implications, and drive traditionally nonclinically relevant behaviors that improve the probability of successful outcomes.
There’s also no reason these features wouldn’t be enabled to link out to general social platforms. After all, if the ‘I Voted’ widget presented to 61 million people on Facebook user feeds could drive 280,000 more people to vote, then imagine what similar approaches to continuation rates on clinical trials could do.