In today's information age, a vast number of new online resources are available to patients. They come with varying levels of interactivity, functionality, and credibility. Some resources serve to curate cutting-edge, evidence-based data that is readily searchable. Other resources serve to create a community where patients can track and share information, advice, and experiences. And still others fall somewhere in between. This means patients have access to more information in more forms than ever before. But most patients are quick to realize that more information and more choice does not automatically lead to more empowerment.
Would you be search, or be social?
If we accept the notion that less than 25% of healthcare is directed by prior evidence, then clearly a searchable archive of 'evidence-based' information would be limited in its usefulness, no matter how vast its reach - another way to think of this is that 'search' can only help so much with patient empowerment. This means that patients will always have a need to have access to community of shared experiences where lessons can be exchanged and the collective intelligence can be leveraged - another way to think of this is that 'social' will increasingly play a greater role in patient empowerment.
But this is far more complex than it might sound. Even though we are smack in the middle of a 'global social revolution' and people are building huge networks of family, friends, and followers online; this does not mean we are even the slightest bit prepared to leverage this revolution to improve healthcare. Sharing health related information and advice online in a peer-to-peer manner is a horse of an entirely different color. It is one thing to comments on a friend's pictures of their children on Facebook or to retweet something clever that we find on Twitter, but it is something else entirely to accept the vulnerability that comes with sharing information about our health or to offer support to a virtual stranger in their own health crises - yet this vulnerability is the hallmark of empowerment.
Are we ready to be empowered?
The fact that we may not be prepared for a new era of 'social healthcare' does not mean that it is going wait for us to catch-up. So what can each of us do to prepare? What are the skills we each need to thrive as an empowered patient?
Skill 1: Assessing credibility and reputation:
Most of us are unaware of the critical information we extract from personal interaction, but much of our trust is derived from assessing body language, intonation, and context - these elements are often missing in online social systems. As a result, we must find new ways to build trust when our interactions are limited within digital healthcare communities.
Skill 2: Filter and curating healthcare information
Once we find a new level of comfort with assessing the credibility and reputation and trust of those in digital healthcare communities, we will quickly find ourselves with entirely new resources and new streams of information. To avoid being overwhelmed, we must find new ways to control and filter this information flow to a level at which can keep up, absorb, and learn.
Skill 3: Providing and accepting feedback and support
As we begin to interact with others in these digital healthcare communities, we will undoubtedly find ourselves in uncomfortable conversations - healthcare is complex and vulnerabilities are high. To get the benefits of peer-to-peer healthcare, we must adapt new ways of sharing critical information and accepting feedback even when it might be difficult to hear.
Skill 4: Being aware of our own healthcare literacy
The strength of digital healthcare communities is that they are inherently social - which means we must remain open to advice and suggestions from others and we must speak up when we have something to contribute. But few things undermine the culture of a community (online or in real life) more than when someone is spouting off about a topic they are ill-equipped to discuss or when they are closed down to advice that could really help. To be valuable members of new digital healthcare communities we must evolve more accurate means of assessing where we stand and what we know so that we can share when we can add value, and we can listen when we have need.
Skill 5: Critical thinking and decision making
But most importantly, true empowerment means that we will be expected to learn about and take ownership of our health and to speak up for our own needs and wishes. Theoretically, we will be able to do this because we will have access to new streams of information, advice, and support through digital healthcare communities. But in order to move from learning to doing, we must evolve our critical thinking skills to synthesize these new resources and inform our decisions.
Embracing empowerment
Ultimately the beauty of digital healthcare communities is that they provide 'community' - we are no longer trying to inform and educate ourselves in isolation. This means we can 'watch' and learn from other in the community and constantly reevaluate our new skills: Who do others trust? How do others control their information flow? How do others interact? How does our knowledge compare to others in the community? And what decision would others make if they were in our situation?
Perhaps this is the irony in the very concept of patient empowerment - we are best positioned to take ownership of our own health, when we accept the reality that we cannot get there alone...
Brian S. McGowan, PhD is a research scientist who has worked as a medical educator, mentor, accredited provider, and commercial supporter. Brian is the author of the Social Media Connections Column for Medical Meetings Magazine and is writing a book on the need for fundamental elements in the medical information stream.