The Voice of the Patient
This January 12, 2005 interview with Don Berwick, at the Health Affairs web site, underlies the importance of doing all we can to make the “voice of the patient” directly accessible-to the press, health policy planners, government officials, and medical professionals.
Like many of us, Don has now concluded that positive healthcare reform will not come from within the health care system, the medical profession, or the federal government. I think that we are edging closer and closer to a crowing consensus that the only hope for successful healthcare reform lies in understanding and leveraging the e-patient revolution.
There’s a deficiency of will and ambition in the major centers of power in the delivery of health care in America. We do not have a shared aim to raise the bar in performance. That’s the problem
External pressure will be necessary to move the system toward meaningful change.
I don’t care so much what the doctors say. I care what the patients say.
The voice of the patient… the eloquence of the patient to speak up about what they need and want, is so powerful. We haven’t invited patients to speak up enough. [We need to provide] a megaphone for the patients. It’s [all about] storytelling; it’s hearing that this patient was in my hospital and this is what they went through. We need to create a space for patients to talk about things like that. Because, sooner or later, it’s going to be me or my child.
New Pew Report on Internet Social Ties
This new report just out from the Pew Internet & American Life Project: The Strength of Internet Ties, by John Horrigan, Jeffrey Boase, Lee Rainie, and Barry Wellman. It calls into question previous fears that social relationships and community are fading away in the Internet age. Instead, it is the very nature of the contemporary community that is changing. We’re moving away from neighborhood-based groups and toward geographically dispersed networks of common interest and communities of choice. Our personal networks continue to include substantial numbers of relatives and neighbors, the traditional bases of community. But friends, workmates, and a variety of new types of virtual associates are playing a growing role in our personal online networks. The authors conclude that:
The internet and e-mail play an important role in maintaining these dispersed social networks. Rather than conflicting with people’s community ties, we find that the internet fits seamlessly within-person and phone encounters. With the help of the internet, people are able to maintain active contact with sizable social networks, even though many of the people in those networks do not live nearby. Moreover, there is media multiplexity: The more that people see each other in person and talk on the phone, the more they use the internet. The connectedness that the internet and other media foster within social networks has real payoffs: People use the internet to seek out others in their networks of contacts when they need help. [And] because individuals — rather than households — are separately connected, the internet and the cell phone have transformed communication from house-to-house to person-to-person.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
