Showing posts with label information studies. Show all posts
Showing posts with label information studies. Show all posts

May 2, 2008

Social Media & Healthcare - The Wisdom of Patients

The California HealthCare Foundation has put pen to paper and documented The Wisdom of Patients: Health Care Meets Online Social Media, in a report of that name released last month. 

The report cites the Pew Internet & American Life Project that indicates patients are more likely to consult the internet for information on a medical condition than a doctor, and that social networks have positive effects on those most isolated from offline social networks. The title is a play on the popular book The Wisdom of Crowds by James Surowiecki, the man most often behind the New Yorker's Financial Page. Surowiecki, and the CHCF report, assert the truth to the old cliche of 'two heads are better than one'. And in fact, the more heads, the better, resulting in what's known as a positive network effect.

It probably sounds scary, looking online for health information, and the arguments of skeptics come quickly to mind - is it reliable, who posted the information, what's their self interest, how can you verify this is true, how does this interact with my specific condition, etc. Yet relying on the singular knowledge of a single physician, who may (or may not) have seen your condition before, also sounds scary. The report cites the example of the DiabetesMine, who were able to self-police product placement out of their social network, and Dr. Daniel Hoch, whose patients have together found and guided him to better tools for working with biofeedback devices in patients with neurological disorders.

Modern healthcare has often loudly extolled the virtues of active patient involvement, and for those of us in America, being proactive when it comes to understanding the conditions, treatments and drugs we and our loved ones take is essential. Enter the social network as provider of information, whether a review of the side effects of a drug to what a certain procedure will be like.

The report goes on to explore the business of health care, and here the report uses the online banking industry as an analogue. When banks took information online, customers reported greater satisfaction with service and the ability to be more informed about financial decisions.  How can this be used in health care? And how can data aggregated (with opt-in permission from consumers, of course) help guide healthcare delivery, patient satisfaction, and increased health?

Finally, what is the future of Health 2.0? Greater transparency when it comes to health care costs, and greater ease of access to information, says the report. It references the launch of www.carol.com, a site whose advertisements here in the Twin Cities make it seem like eBay for health services (which, I think is a good thing?), as an example of introducing patient knowledge and competition into the health care market. And they discuss the future development of the Semantic Web, where computers are better able to parse and make sense of consumer searches. (More on that to come in future posts.) 

Ultimately, the report is a useful overview of what's happening in the world of health information. When it comes to the internet and social networking, I'm reminded of the Minnesota nonprofit organization Caring Bridge, that helps families create Web sites to keep others informed when a loved one is sick or in the hospital, helping to rally offline support through an online medium.

And I'll close with the story of Matt Logelin, who was featured on the cover of the Star Tribune in late April. Matt and his wife Liz, both former Minnesotans, had just had their first child, Madeline, when Liz passed out and suddenly died as result of a blood clot. So Matt, now a single and grieving Dad, went online to find support. It's a heartbreaking situation, but one that demonstrates the power of free information, and personal agency when it comes to health care online. 

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April 26, 2008

Hello, world.

I love thinking about Information. Capital I Information, as in Library and Information Studies, Information Technology, the Information Age, Informatics. I'm also intrigued by the lower-case kind - how we find information; how we use information to train, instruct and shape the world; the ways information is used, divulged, and wielded in power structures; and the transformation of information --> knowledge --> action. And so in this spirit of affection for information, I'm launching The Secret Life of Information to bring light to these thoughts.

To help tether these abstract ideas to earth, a few thoughts on the outset of this blog:
  • I define Information broadly, as a concept, with frequent recurrence and application in everyday life. In the words of Wikipedia (accessed 4/26/2008): "Information as a concept bears a diversity of meanings, from everyday usage to technical settings. Generally speaking, the concept of information is closely related to notions of constraint, communication, control, data, form, instruction, knowledge, meaning, mental stimulus, pattern, perception, and representation."

  • Information, I believe, lives a secret life in that the immensity of the Internet and the aggregation of human knowledge over time is a Borges-esque labyrinth, unknowable in its sheer size. How can normal, everyday people navigate these meta-libraries to create meaningful lives, productive societies, just governments, and empowered communities? How can Information be made human-scale, and what technologies will we use to do it? I'm intrigued by online searching, tagging, linking, and efforts to digitize libraries; I'm hooked on concepts from social media to agile software design, and by the fantastic people, organizations, and ideas I encounter. I hope to highlight and aggregate those projects here.

  • As a current practitioner in the nonprofit sector in the United States, I see the sector as the "information sector", and hope to lead and explore ways of shared, cooperative knowledge management for the intentional creation of communities. I see myself as a professional learner, aspiring librarian, educator and overall smarty pants. And what kind of smarty pants would I be if I wasn't online being smart?

So at the outset of this creative endeavor, some apropos whimsy from Cat and Girl.

-nicole