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Tag: Online Communities

Adam Bosworth speaks about Google Health, Keas and everything

Adam_bosworthAfter a long period of time I’ve finally wrestled Adam Bosworth to the floor and forced
the microphone to his mouth. Adam of course is the software guru (he’s one of the originators of XML) who went to Google to start Google Health, and spent much of 2007 talking about how he hoped Google Health would change health care. He then left Google Health (several months before it launched in March 2008) and at the very end of 2007 founded Keas. Adam will be at the Health 2.0 Conference and while Keas is in stealth mode at the moment, he may just be ready to show us all a bit of Keas’ technology by then.

But he also has very strong views on health technology, data, PHRs. HealthVault & Google Health, and much much more. Listen to the interview.

Health 2.0 for cancer trials

Greg is well known to THCB readers as a long term commentator on the oncology scene with a  keen interest in chemotherapy assay testing. Here he writes about a new type of clinical trial — Matthew Holt

The traditional meaning of Health 2.0, according to Jane Sarasohn-Kahn’s "Wisdom of Patients" has been the use of social software and light-weight tools to promote collaboration between patients, their caregivers, medical professionals and other stakeholders in health.

An example of this in cancer medicine is Individualized Online Clinical Trial Protocol Version 1.0 by the Weisenthal Cancer Group, a Phase II evaluation of individualized cancer treatment with traditional cytotoxic chemotherapy, targeted anti-kinase drugs and anti-angiogenic agents.

With most clinical trials, investigators never give out information as to how people are doing. Most trials are failures with respect to actually improving things. The world doesn’t find out what happen until after a hundred or 500 or 2,000 patients are treated and then only 24 hours before the New England Journal of Medicine publication date.

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Google Health and the PHR: Do Consumers Care?

Google Health’s unveiling last week and Microsoft’s HealthVault launch last October
are important milestones in the evolution of Health 2.0. Both of these heavyweights have the resources and potential to improve the health consumer’s customer experience. I have followed the active (and important) conversations about privacy concerns, HIPAA, and Google Health’s terms of service, which are well represented by Erik Schonfeld’s post on Techcrunch and Larry Dignan’s post on ZDnet. And I read with interest Google’s rapid response offered by Google Senior Product Counsel Mark Yang.

What’s missing from all of these conversations is the elephant in the room: Do consumers really care about having online personal health records?

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Diabetes reloaded

To mark the advancements and ongoing journey in diabetic care DiabetesMine, an online community and resource for diabetics, created this video.

The theme, Diabetes Reloaded, stands for "redefining not only the role of technology in managing chronic diseases, but also for the newfound self-confidence and ambitions of 21st century people living with health conditions. What’s special about this new web-enabled world of healthcare? It’s proactive, technology-based, empowered, revolutionary, against all odds, and – if needed – outside the establishment."

Podcast with Marston Alfred, founder and architect of SugarStats

Marston Alfred, founder and chief architect of SugarStats.com chatted recently with me about his relatively new, Web-based program that allows diabetics to track their health statistics online.Sugarstats_2

Alfred described SugarStats as a portable PHR specifically for diabetics. He hopes diabetics use it to share their progress with others, such as family and doctors, and that by doing so it will improve their adherence to diet, exercise and medication schedules.

SugarStats launched publicly a year ago. It currently has about 4,000 users and gets an average of 10,000-20,000 unique visitors each month.

A diabetic himself, Alfred talks about the need for SugarStats and his hopes for the company’s future. Listen to the podcast.

E-patients can and will revolutionize health care

By taking advantage of new online health tools, e-patients and health professionals
now have the ability to create equal partnerships that enable individuals to be equipped, enabled, empowered and engaged in their health and health care decisions.

That was the vision of Dr. Tom Ferguson, who coined the term e-patients and launched e-patients.net in 2006. Ferguson intended to upload his book-length overview of the online health revolution, “E-patients: How They Can Help Us Heal Health Care.” But unfortunately, he died a month later 2006, after losing a fifteen-year battle with multiple myeloma.

Following Ferguson’s death, a group of his friends and colleagues completed the paper and adopted the blog to carry on his work, as well as our own. Each blogger brings a different perspective when commenting on Health 2.0 developments.

We think the “E-patients” paper remains relevant in 2008 (PDF, wiki) and we hope to extend the findings into the future. To that end, we are also working on the creation of the peer-reviewed Journal of Participatory Medicine with the help of Sarah Greene of the New York Times; Bruce Shriver, PhD, of the Liddy Shriver Sarcoma Initiative; and George Lundberg, MD, of Medscape. We welcome your comments and suggestions.

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Analyzing the benefits of PatientsLikeMe social network site

Two research papers were published this month on the Health 2.0 Web site, PatientsLikeMe. PatientsLikeMe is arguably the only "real" health social network online today, because it allows patients to share actual data that matters with one another — their personal health data.Patientslikeme

(Other supposed health social networks seem more focused on the "social" than the "health," allowing for little integrated data sharing.)

The two research papers provide some interesting data points and insights into the disease process itself and how e-patients are using Web-enabled tools, such as PatientsLikeMe, to improve their own care.

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Humana’s competition for change

Health benefits heavyweight Humana Inc. (HUM – 11.5M members) recently launched ChangeNow4Health, an ambitious, optimistic coalition inviting anyone to submit ideas to fix America’s ailing health care system.

The top three entries receive a $10k prize, and the top 20 get publication exposure galore, including a spot in Humana’s forthcoming e-book, “Tomorrow’s Health Care.” The big winning concepts have a chance to secure further funding and incubation support from Humana.

Full Disclosure: Shortly after this interview was conducted, ChangeNow4Health became a sponsor of The Health care Blog. However, if you think that in any way influenced the content of this article, you don’t know the Health 2.0 folks very well…

Cn4hds

On the second day of World Health care Congress 2008 in Washington D.C., I interviewed Elizabeth Bierbower, Humana’s Vice President of Product Innovation.

Bierbower, who has spent her career working with consumers, told me that ChangeNow4Health is looking for doable ideas that can quickly be put into play in the game as it is now, not how we wish it were.

They’re also harnessing the power of the semantic Web by partnering with Innocentive.com, an online community that posts projects from groups like the Rockefeller Foundation.

The contest has 4 categories:

  • Helping Consumers Make Smarter Health Care Decisions
  • Simplifying the Business of Health Care
  • Preventing Sickness and Maintaining Health
  • General Innovations in Health Care

The contest runs through July, and winners will be announced in August. Judges include industry experts, who are looking for “both an idea’s potential to bring about true change in a tangible way” and “feasibility for implementation now.”

Here’s a transcript of my conversation with Bierbower.

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iMedix: Social search that creeps me out

Oh, geez. Deb21 wants to chat again. Stoltz

Here I am, trying to look up some information about tinnitus – a.k.a. ringing in the ears, a condition which has recently afflicted a member of my family – and Deb21 [I’ve changed her handle to protect the innocent ] wants to chat. A little photo box pops up on my screen, with the icky solicitation “I’m online! Chat with me now!” There’s even an audible little ping whenever she implores me to spend some time with her.

Welcome to iMedix, a “social search” site in the personal health space.

In concept, social search is powerful: Combine the algorithmically valid but brain-dead health search results of a typical search engine with the “wisdom of the crowds” – the aggregated opinions of real humans who can validate the information they found worthwhile when dealing with the same issue. Add to that the ability to connect with those people, and (goes the theory) you’ve got something good.

Like any 2.0 community, iMedix faces the challenge of creating critical mass: A community with nobody home is in a death spiral from Day One. But building critical mass from scratch is no small task in mid-2008. Early adopters are oversubscribed to social networks and the mainstream hasn’t figured out what all the fuss is about. Every business based on network power needs people. A lot of them. Fast.

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Medical Privacy: The Challenge of Behavioral Ad Targeting in Healthcare

The latest
piece in the medical privacy jigsaw puzzle is online behavioral
advertising.

Last week, the Federal Trade Commission
(FTC) received comments from the Network Advertising
Initiative
NAI
on the agency’s proposed principles for OBA. As part
of this filing, the NAI has published in draft its own
approach to behavioral ad targeting in health, included in the Self-Regulatory Code of Conduct for
Online Behavioral
Advertising

Online
behavioral advertising OBA
is the process whereby the online consumer’s search behavior is
analyzed across multiple websites and then categorized for use in
advertising online.

NAI’s members are reputed to cover 95% of
the online advertising market. NAI’s
membership includes 24/7 Real Media, Acerno, Advertising.com (an AOL company),
AlmondNet,
Atlas (a Microsoft company), BlueLithium (a Yahoo! Company), Doubleclick
(a Google company), Media6degrees, Mindset Media, Revenue Science, Safecount,
Specific Media, Tacoda (an AOL company), and
Yahoo!. Furthermore, NAI is
processing membership applications from Undertone Networks, Google and
Microsoft.

Toward the end
of the NAI’s
Code you will find a section called, "The need for common understanding
by industry," in which the NAI
lists the "minimum restricted and sensitive consumer segments" that
online advertisers should avoid targeting.

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