Trusera, out of beta & different enough to be interesting

By Matthew Holt

Keith Schorsch is a busy boy. Not only did he write a much commented piece about Google Health and PHRs on this very station last week, but he also popped by last week to tell me about the new look for Trusera. Several of you saw Trusera launch at the Health 2.0 Conference last March. As of today they’ve removed the Beta tag, and have introduced a new look and new features.

The way Trusera is going about things is by collecting stories and journal entries, and then essentially parsing the keywords and text in those stories to connect people with others with similar situations. The distinction between this and most other social networking sites is that Trusera doesn’t have “forums” or “channels” per se, but uses its search technology (somewhat inspired by Amazon where several of the founding team came from) to match lurkers and contributers with content and people relevant to them. There’s also some neat tools to help people build their stories with helpful suggestions appearing to the side as they’re being written—think of the Microsoft paper clip but done well! (At this stage it doesn’t take detailed self reported patient clinical information a la PatientsLikeMe or PHRs).

So far there’s sizable activity on Trusera in autism, breast cancer and infertility among other conditions. And of course Keith’s aim is to develop hundreds of thousands of members and millions of stories.

Trusera’s approach is different enough to be interesting as another option for community online. The technology is arguably better than others in the space, but as we know from other markets “better” technology doesn’t always mean most successful—as I tell many of my Mac using colleagues.  But as was also pointed out to me this weekend, that the vast majority of patients are not yet online in these communities. So it’ll be interesting to see as these numbers grow, who will be standing. Trusera clearly has a shot.

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[Dan]

Recently published on: www.beforeyoutakethatpill.com

The Prevention of Ignorance

Historically, information sources provided to American citizens were limited due to the few methods available to the public, such as radio, TV, or news print. And also this information was subject to being filtered and, in some cases, delayed. This occurred for a number of reasons, which included political ones.

Now, and with arguably great elation, there is the internet, which can be rather beneficial for the average citizen.

Soon after the advent of the internet well over a decade ago, web logs were created, that are now termed ‘blogs’. At that time the blogs were referred to as personal journals or diaries visible on line. As time passed, blogs became a media medium, and blog communities evolved into addressing topics that often were not often addressed in mainstream media, as they crossed previously existing political and social lines.

In addition, blogs provide immediate contributions by others, the readers of the posts of the blog authors, instead of the cumbersomeness of opinion and editorial pieces historically and not always presented in such media forms as newspapers or magazines.

The authors of blogs vary as far as their backgrounds and intent of what they choose to address on their blogs exactly, just as with other media forms. Some are employed by the very media sources that existed before them.

Furthermore, they are not exonerated from the legalities of what is written, such as cases of libel. While we can presume that bloggers like to write, they may not be quality writers, yet several are in fact journalists, as well as doctors and lawyers, for example. But to write is to think, which I believe is a good quality one should have.

Yet presently, blogs have become quite a driving force for those with objectives and issues often opposed by others, and therefore have become a serious threat to others. These others may be politicians, our government, or corporations- all of which have been known to monitor the content of certain blogs of concern to them for their potential to negatively affect their image or their activities previously undisclosed. This is why blogs, on occasion, have become a media medium for whistleblowers, which will be addressed further in a moment.

While one disadvantage of blogs is the potential lack of reliability, blogs however do allow in addition to the comments of its readers the posting of authentic internal or confidential documents that typically are not created to be viewed by the public, yet are acquired by certain bloggers. For example, blogger Dr. Peter Rost, a whistleblower himself, not long ago posted a newsletter published by pharmaceutical company AstraZeneca on his blog site, and this newsletter was given to him by AstraZeneca's employees who called themselves the ‘AZ Group of Seven’- with the intent of this group being to bring to the attention of others the illegal activity of off-label promotion of one of AZ’s cancer drugs promoted by their employer. Yet this particular concern by AZ seven, by surprise, is not what caught the attention of so many who viewed the posted newsletter by Dr. Rost and was read with great interest by others. It was instead a comment included in this newsletter that was stated by former regional AZ manager Mike Zubalagga, who was being interviewed by a district manager in this newsletter. Mr. Zubalagga, who in this newsletter posted on Dr Rost's blog site, referred to doctors’ offices as ‘buckets of money’, which caught the attention of several readers. This and other statements by this man were in fact published in this newsletter clearly not reviewed before its publication. . Again, the statement and the newsletter created by AZ was indeed authentic and further validated due to the content being in the written word, which added credibility.

Mr. Zubalagga was fired the next day due to this ‘buckets of money’ comment due to the effect it had on the image of his employer. His manager resigned soon afterwards from AZ.

Blogs, one can safely conclude, reveal secrets.
And there have been other whistleblower cases on various blogs in addition to this one described a moment ago, which illustrates the power of blogs as being a very powerful and threatening media medium of valid information disclosure that others cannot prevent from occurring.

This, in my opinion, is true freedom of information- largely free of embellishments or selective omissions. It’s a step towards communication utopia, perhaps, yet a force that has the ability to both harm and protect many others.

Yet again, the information on these blogs should not be taken as absolute truth without proof to verify claims that may be made, as with other media sources. Of course, documents that are authentic is an example of a good validation source. And this, in my opinion, is the blog’s greatest value, combined with the comments on blogs from the growing number of readers who are allowed to contribute to the subject matter so quickly, which fuels the objectives of the blogs, which may be a type of Socratic learning.

Like other written statements, some on such internet sites are composed with respect of the written word. Others are not. It's the freedom that may be most appealing of this new medium which has the ability to convert citizens into journalists who want to contribute to an issue of their concern they share with the blogger often with great conviction and accuracy.Because we, the public, have a right to know what we are entitled to know and what we want to know.

This is especially true if the information disclosed on blogs could potentially be adverse to our well-being.

Ignorance is bliss, but knowledge is power.

“Information is the seed of an idea, and only grows when it’s watered.” --- Heinz V. Berger

Dan Abshear