September 2, 2009
By Marcin Chwistek, MD, Attending Physician, Pain and Palliative Care Program,
Supportive Oncology Care, Fox Chase Cancer Center, Philadelphia, PA
I joined Twitter around the last elections, fascinated by social media’s power in inducing a societal change. The optimism and the real sense that we can change things for better were palpable. I had not felt anything of that magnitude since I witnessed, as a college student, the first democratic election in my native Poland in the early 1980’s. I stuck with Twitter since then, and have been primarily using it to tweet about issues related to cancer pain and palliative medicine. Over time, my community on Twitter has evolved into a fascinating mix of people: patients, medical librarians, consultants, physicians, head hunters, nurses, community organizers, news organizations, social workers and cancer advocates to name a few. And although many of them are interested in issues concerning pain management and cancer care in general, it would be incredibly naïve to think we all have common goal or even agree on things. Our backgrounds, life experiences, geography could not be more diverse. And yet, I have a sense that as a group we have a new responsibility. Clay Shirky, who has been writing about social media for a while, said this during his recent TED talk: “Old Media: professionals broadcasting messages to amateurs are increasingly slipping away. In a world where former audience are now increasingly full participants, it is less and less about crafting a single message to be consumed by individuals, it is more about environment for convening and supporting groups…. How can we best use it? “
Traditionally, it was the pain physicians or researchers broadcasting to the community of pain patients. They might have written books on the subject, speak at a conference or for a TV program. Now it is pain patients (and again there is this amazing variety within the group – cancer pain, fibromyalgia pain, back pain etc), pain advocates, pain physicians, pain educators, pain researches organizing their own groups on Twitter, MySpace or Facebook. The groups may function as a support group, as a place to exchange ideas or perhaps as a resource. The Internet makes those goals incredibly easy. Without however committing the groups to bigger goals, more ambitious goals, goals that would affect lives of many people I am afraid we are not using the power we were given. Pema Chodron in her new book,”Taking the Leap”, writes, about “three basic qualities that have always been with us but perhaps have gotten buried and been almost forgotten” … natural intelligence, natural warmth, natural openness. I would argue that these qualities apply to groups too. There is a natural intelligence that is bigger than the sum of our individual minds, natural intelligence of the groups or “the wisdom of crowds” as James Surowiecki names it. We need to engage it as it would point naturally to what needs to be done. Natural warmth is our empathy. But hearing the stories, which being a part of online community enables, our empathy increases and we all are moved to action. Empathy is a seed of compassion, and compassion is an urge to act on behalf of those who suffer. We can choose to be moved by the stories we hear and act on them. Empathy has the power to focus our attention on issues we may have otherwise not known about. And finally, there is natural openness that Pema Chodron describes as the spaciousness of our sky-like minds. It is a beautiful metaphor, and when I think about social media, this metaphor seems to be even more powerful – Individuals working in their own seemingly separate environments, but connected on the net. It is literally “minds connecting in the sky”. Pema contrasts this attitude of openness with a fear based view “where everyone is either an enemy or a friend, a threat or an ally, someone to like, dislike or ignore.” And as anyone who has experienced it first hand, as a patient or a clinician knows, medicine is riddled with fear. There is fear of misdiagnosing the disease, fear of not being good enough, fear of not being in control, fear of being in pan, fear of not regaining ones health, fear of relationship etc. Fear seems to be in a way of most of what we do. As Parker Palmer says in one of his essays:”Fear is not just an emotion, but a central feature of the culture that surrounds us”. Being in a group, feeling a strong sense of community united to improve wellbeing of others, could be one of the best antidotes to fear. And it comes to generating a change in how medicine is practiced today; it may turn out to be our biggest asset.