“Words are not merely ‘signs’; they are names whose ‘attachment’ to events, objects, persons, institutions, status groups, classes, and indeed any great or small collectivity, soon tends to determine what we do in regard to the bear of the name.” –Kenneth Burke, Permanence and Change, p. xv.
Healthcare reform is underway, and we are calling it a list of names: “health 2.0″, “medicine 2.0″, “web 2.0″, “participatory medicine”, “e-patients”, “team-based” and “collaborative”. But despite the billions of dollars being devoted to such reform, the money while necessary, will not be sufficient to reform health care – understanding the name we give to reform will largely determine how we re-organize our medical systems, our medical education and therefore, our medical care.
For example, what does it mean to say that medicine is participatory? And does more participation equal better care?
e-patient Judy Feder recently discussed how patient community knowledge saved her life. Specifically, she talks about her participation in her e-community and how she wouldn’t be alive without it. She states, “If for no other reason, I love my e-community because I can sound off about the shortcomings of cancer vocabulary.” Generating a host of interesting comments on her post, e-patient Dave commented, “This is a key thing for us all to realize as we continue moving into the world of participatory medicine: it’s AMAZING how much information people can absorb when their lives depend on it.” What exactly does “e” mean you might be asking? Patterns of “e” mean empowered, engaged, equipped and enabled. But empowered to what end? Engaged for whom? Equipped with what resources? Enabled to do what?
Similarly, Bertalan Meskó from Science Roll talks about participation by way of Web 2.0. His recent presentation on how e-patients will shape the future of medicine is both innovative and disturbing at times. Some language used in his reform presentation include: patient communicates with the doctor via webcam; their genomic data is also on a secure USB drive; their doctor uses RSS feed to be up-to-date; uploads medical cases; collaborates online; sitting in virtual classrooms in Second Life; listening to podcasts; web-savvy doctors and on-line reputation. For many, these may be new words – or may be words that are taking on a life of their own. But how do such innovations extend or complexify our understandings of patient-provider relations? And what happens to the beating of a heart, the sound of a breath and the meaning of the question, am I going to die? using this kind of vocabulary? Even more, what does it mean to connect with your patient and connect with your provider?
Amidst the “e” discussions, Pauline Chen, MD recently asked how connected are you to your doctor? She articulately describes a relationship with a patient where the two participated and shared a strong bond they had formed over several years. She cites a recent study in the Annals of Internal Medicine that discussed “connectedness” and reported that 60 percent of patients studied (out of 155,000) had the kind of relationship with their specific doctors that could be considered “connected.” But a sizable minority did not. Steven J. Atlas, MD, lead author and co-director of primary care quality improvement at Massachusetts General Hospital in Boston attempts to interpret the results by stating, “There are a lot of other care models that we need to think about if we are to deliver care in a way that is congruent with patient beliefs and lifestyle. It’s not just connecting a patient with a specific doctor.” He goes on to add, “maybe we need more visits by phone, e-mail and iChat, or by patients taking a photo of their rash then e-mailing it.” He concludes by describing how the doctor-patient relationship is both a positive thing but also something falling apart. “By focusing on new treatments, new technology and instant access, we have undermined the patient’s ability to have a longstanding relationship with a doctor, to have a doctor who knows him or her as a human being.”
My mom, healthy, sharp and dangerously witty cannot “survive” with innovations like e-patients, e-communities, web 2.0 and so on. And there are plenty of people like her who may be at “e-risk.” Therefore, it is important to take care defining such reform because it will soon determine our behaviors as well as the very voices who have access to participate in such reform. Because after all, isn’t the very goal of such reform a collaborative model including the interests and voices of many individuals and groups in making decisions about health and care?
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