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September 2011 Contents

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Democracy, the Internet, and the Health of the World: What's Changed?

Chris Hass

Chris is the President of the Usability Professionals' Association (UPA) Boston Chapter, and an Advisory Board member of UPA International. He is also a Senior Vice President of Experience Design at Mad*Pow where he directs human factors research, user interface design and accessibility activities for the development of innovative user experience products and programs.

In 2008, a study conducted with 52 New Zealand-based non-profit organizations concluded:

"Almost no organizations utilized the technology for horizontal or vertical flows of communication, data communality, interactivity, or engaged participation. Furthermore, these nonprofit organizations believed the Internet offered little democratizing power but paradoxically provided instant credibility...Claims of sweeping improvements in democratic participation through the Internet were not supported."

-- Nonprofit Organizations' Perceptions and Uses of the Internet Television & New Media
September 2008 9: 407-428, first published on March 3, 2008


This study illustrates a group of thought-leaders envisioning the possibilities afforded by the Internet, by social media, by the proliferation of computing technology deeper into populations, but not yet reaping the benefits of that potential. Frankly, it's disheartening.

Which led me to wonder: Right now, in 2011, is it fair to say that non-profit organizations' use of the Internet remains so highly regarded in theory, but uninspired and ineffectual in practice? That the Internet offers "little democratizing power?"

Assuming that the study's authors mean "democratizing" to connote "shifting the balance of power from organizations to individuals," there is strong cultural and technological evidence that the 2011 answers to these questions might be very different than they were in 2008.

This "democratic" shift in power from the institutional to the individual is occurring today both literally and figuratively. Take for example the recent "Twitter Revolutions" in the Middle East where social media technology enhanced citizens' abilities to coordinate, to mobilize, to speak, to be heard, and to - literally - democratize. This shift in power is also occurring figuratively, perhaps less dramatically, as evidenced by the evolving empowerment of individuals to take ownership of and contribute to their personal health data records.

As these two examples illustrate, across the globe, innovators and organizations are quietly (and not so quietly) using the connectivity afforded by the Internet to cross wire seemingly disparate tools and schools of thought for powerful effect. Perhaps in 2008 someone saw the potential connection between Facebook, Twitter, and regime change. Alternatively, perhaps we too easily overlook the adaptability of individuals to co-opt any tool that addresses an important need; however seemingly unrelated the intended purpose of the tool is to the purpose it is put to. Regardless, clearly, the democratization of computing power has brought with it both tremendous opportunity and surprising outcomes.

Some of the most inspiring and compelling anodynes for this study's findings may be found in the healthcare arena. In the United States, the topic of "healthcare and technology" has been omnipresent in recent months. Our communications channels have been over-full with a punditocracy proffering polarizing views of how healthcare should be delivered, funded, and paid for. Nevertheless, acting largely beneath the radar of the "mainstream media," several data revolutions and revelations are occurring that are in fact bringing democracy to the masses and are poised to have dramatic effects on individuals' personal health.

My firsthand observations of, and interviews with, healthcare providers, their leadership, and their governing agencies has led to some interesting examples of "democratization" in action: Healthcare institutions are increasingly recognizing the value of unifying their internal technology systems and care-giving practices. Federal, state, and local agencies that provide healthcare support and governance see increasing value in cross-institutional data aggregation and both the non-profit and commercial institutions they govern increasingly agrees. Direct care providers are reevaluating doctor-patient relationships as patients gain greater access to medical information and can closely monitor their own health data trends. It is becoming efficient and cost-effective for organizations to draw upon the energies of patients and family members who are often highly motivated to do extensive research on their own behalf.

Web-based applications such as PatientsLikeMe are leading their own quiet revolutions by merging social networking tools with electronic healthcare recordkeeping in order to improve individual health outcomes through the aggregation of collective data. Physician researchers like Nicholas A. Christakis are discovering similarly powerful connections between social networks and personal health, pioneering a field of study known as "social network science." In addition, all of this is occurring at the very moment that insurance and healthcare providers are viewing customer self-service as a panacea for changing regulations, confused business practices, and complex internal systems.

Perhaps since 2008 when non-profit organizations saw no democratizing benefit from Internet-enabled services this view has changed. Technology, organizations, and individuals are benefitting from (or at least trending towards) self-democratization and data-empowered populaces. Examples abound where institutions and individuals are turning the tools of communication into data-based interventions and revolutions that in turn become our future.

Ideally it will be a future where companies, organizations, and individuals maintain a mutually beneficial i.e., democratic, balance of power. And hopefully it didn't escape your notice that UPA International is itself, a not-for-profit organization. What should/could we be doing better? How are you using the connectivity of today to understand and improve the outcomes of tomorrow? Are you in 2008, 2011, or somewhere far ahead?


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