OK. Enough for my break up speech with this travelogue. This podcast is pretty much a recap of things I–no, we–have learned, a wrap up on some things that may have been unclear, it’ll tie everything together  and I’ll reach some conclusions about the Pulse Pen and where we stand…on a more personal level.

Oh, and there is some very emotional farewell music at the end. I couldn’t resist.

And here’s a cute (not so little) chart about recording policies at the University of California

Anyway, here it is: my third podcast. In this episode I look at privacy and consent and at one particular case of a non-consensual recording that took place in a New Jersey high school a while ago. A teacher was caught telling his students that they belonged in hell if they didn’t accept Jesus as their savior, and that’s just the beginning.The case is really something so if nothing else I suggest you listen to the link below. It’s some clips from the recording at the school.

Where Jews, Muslims, Atheists, Buddhists and everyone not Christian is going

NYT Sound Clips

“Privacy is a sweeping concept encompassing among other things freedom of thought, control over one’s body, solitude in one’s body, solitude in one’s home, control over information about oneself, freedom from surveillance, protection of one’s reputation, and protection from searches and interrogations”.

Clearly this is the case with Patient Privacy distress that I have been researching.

Noting that Patient Privacy is an enormously potent issue has been something I clearly demonstrated throughout this travelogue. I don’t think that anyone would argue that patient records on the web whether it be through Google health, Microsoft health vault, the Zuri, or any other mode of Internet health records is one hundred percent of a positive thing. However, as with anything else in life it does have both its positive and negative attributes. Therefore, before ending this third travelogue I find it extremely necessary to explore both the advantages and disadvantages that come along with patient health records on the web.

The advantages that I could think of are these:

1. A Patient can monitor all of his records with ease constantly having them at his disposal. He could to some extent monitor his doctor’s accuracy.
2. All of your records can travel with you. If you become ill or have some sort of accident while your on a vacation both you and your out of town doctor will have your records within moments.
3. Online Health records are all http which are supposedly private (assuming there are no problems)

The disadvantages I have obviously come across lie in the issue of privacy. Here is some prime examples to highlight just how grave the issue is.

1. Despite online health sites being http’ s according to Amanda Angelotti, a spokeswoman for Google Health, they are not entirely secure. She says,

“In some sense, no one can ever really know about the data they hand over, whether it’s financial data or medical data or anything else…In some sense you can never be truly protected.”

And she is quite right. While doing research for a story she was writing, Elizabeth Cohen a CNN correspondent was surprised to discover her entire medical history on the web. There on her health insurance company’s website were her annual mammograms, the visits to the podiatrist for the splinter in her foot, the kind of birth control she uses and the prescription drugs she uses.

Both Google Health and Microsoft Health Vault promise not to sell or disclose any of your information unless it can legally alleviate them from any issues with the law. Specifically on the site for Microsoft Health Vault it says

“the company may disclose a user’s personal information to comply with the law, to protect the “personal safety” of members of the public, or to defend the rights of Microsoft.”

To conclude:

I think that eventually as with any other form of new media the majority of us will fall into the trap and use this system for convenience. However, this travelogue has taught me the importance in truly asking questions and exploring the system your are about to hand your information over to (as we should willingly think about when it comes to google in general as well).

This picture is exactly what we all fear with things like the “Zuri”…. Dr. EVIL breaking into our “health vault” and robbing us of our privacy!

“Each time you visit a hospital, physician, or other health care provider, a record of your visit is made. Typically, this record contains your symptoms, examination and test results, diagnosis, treatment, a plan for future care or treatment, and billing information” (http://umcwy.org/Services/HIPAA.htm).

This process seems quite simple and non-invasive. We’re all used to going to the doctor, being checked out, having a few things jotted down, being told our diagnosis and possibly taking home a prescription. Without having our visit and our health consistently documented how else could we expect doctors to make decisions about our health in the present and for the future. It seems quite logical that they be able to base it on our past. If my doctor never recorded that I am highly allergic to penicillin a nurse or a substitute doctor may never know that and prescribe it to me and possibly kill me. We all agree that creating a personal file and documenting our health records is a necessary method to ensure we are taken care of in the best way possible.

The question is where, when, why, and how does this become an issue of fear and concern.

We’re comfortable with our records being written in pen because we are used to it. However, in the same way that our files could be exploited when it is put on the web it could be taken advantage of when written on paper just the same. Perhaps there is some evil nurse working in our doctor’s office (and she certainly has physical access to the file) and she chooses to hand it over to some person who has no right to have it or see it.

To avoid issues like this in 1996 under the Clinton administration congress enacted the Health Insurance Portability and Accountability Act or otherwise known as HIPAA. Title II of the HIPAA is described on Wikipedia. It says,

“Title II of HIPAA, known as the Administrative Simplification (AS) provisions, requires the establishment of national standards for electronic health care transactions and national identifiers for providers, health insurance plans, and employers.

The Administration Simplification provisions also address the security and privacy of health data. The standards are meant to improve the efficiency and effectiveness of the nation’s health care system by encouraging the widespread use of electronic data interchange in the US health care system.”

As Erin has expressed in class a few weeks ago doctor-patient confidentiality is an extremely sensitive issue that is often taken very seriously. By both patients and doctors. Even before the time when files could be recorded on the web people felt vulnerable having their records out in the open. Therefore, official political measures were taken to “ensure” patients that they will not be exploited. Now that we see our files can be shared on the web and it’s not just some “what if” we discuss in class (as in the case of the Zuri which is intended to be released in 2009 or Microsoft Health Vault) we are seeing the fears of the public rising. We are also seeing the makers of these digitized products attempting to calm consumers down in other non- political ways. Why else would Microsoft name their product Health Vault? Clearly insinuating that the records are locked away in a place that only you know the redeeming code.

The question is….are these political (HIPAA) and non-political (Health Vault) attempts enough to protect us?

Here is a blog posted by John Mack on October 5^th 2007 responding to the launching of Microsoft Health Vault: (***NOTE I DID NOT WRITE THIS. THIS WAS JUST SOMETHING I CAME ACROSS WHEN DOING MY RESEARCH)

There has been much press lately about Microsoft’s newly launched health Vault Web site designed to allow consumers to store and share their “personal health records” (PHRs)”.

Over the years, several different companies and organizations have tried to offer this kind of service and all have failed to generate much interest among consumers.

According to a Wall Street Journal article:

“Microsoft Corp.’s quest to be a player in health-information services faces a broader challenge already rankling the health-care industry: how to collect information that many consumers don’t even share with their families.

‘The service throws Microsoft into a crowd of insurance companies, employers, Internet companies, start-ups and tech companies trying to provide digital-health records to patients and consumers. Included are Aetna Inc. and WellPoint Inc., which hold billing and claims data that they are trying to use to build personal-health records, and newcomers like Microsoft and Google Inc., which says it is working on a system but hasn’t disclosed specific plans.” (See “Microsoft’s Health Push Faces Obstacles“.)

As the WSJ article points out, one concern for consumers is privacy. And consumers SHOULD be concerned, especially with a service offered by a company well-known for security lapses and violation of EU and FTC privacy laws and regulations.

You may recall that both the EU and FTC sued Microsoft over its Passport identification and authentication system (see EPIC’s “Microsoft Passport Investigation Docket“) — the same system Microsoft uses for the HealthVault registration process. According to the HealthVault privacy policy:

To sign into the Service, you are asked to enter an e-mail address and password, which we refer to as your Windows Live ID or your Microsoft Passport Network credentials. After you create your Windows Live ID, you can use the same credentials to sign in to many different Microsoft sites and services, as well as those of select Microsoft partners that display the Windows Live ID or Microsoft Passport Network logos. By signing in to one Microsoft site or service, you may be automatically signed in when you visit other Microsoft sites and services.

Aside from the privacy and security risks inherent in centralized storage of personal information — that’s what Passport does — there is the issue of who benefits the most form HealthVault, the consumer or Microsoft.

In 2001, EPIC filed complaints alleging that the Microsoft Passport system facilitates online profiling. EPIC claims that Microsoft officials have stated that the goal of the system is to create a profile of every Internet user, to upsell individuals to subscription accounts, and to engage in ad targeting of Passport members.

Numerous surveys indicate that the vast majority of Internet users seek health information online. Consequently, the quickest way to sign up a majority of Internet users to Passport is through so-called “online health services” like HealthVault.

But consumers see very little benefit in having an online PHR. As reported by the WSJ:

“Consumers are just not that excited about these services,” said Elizabeth Boehm, an analyst at Forrester Research Inc. A scant 6% of consumers used a Web-based program or personal-computer software to track their health and medical information, while 94% said they use paper-based methods, according to a Forrester survey of 10,400 North American households in 2005.

Anyway, why would you entrust your personal health information with a technology company known to be prone to privacy and security lapses? Wouldn’t it make more sense to go with a service from a company with healthcare experience like Aetna or Wellpoint? While you may not trust health insurance companies, at least these companies must comply with health information privacy and security standards set by HIPAA and they have a good incentive to protect their clients’ privacy — unlike Microsoft, their business depends upon it.

What about Google? They also plan to offer a similar service to consumers.

I don’t think too much of Google’s healthcare savvy (see “Google’s Old School Health Advisory Council“). But, more importantly, Google is competing with Microsoft and is sticking its nose into the health arena as part of its own plan for world domination of the Internet.

But on the other hand…

Alissa Cooper, of the Center for Democracy and Technology, says that steps by Google to make data anonymous are encouraging, but that personal info can still slip into the wrong hands and be linked back to a specific person, even if the company means well.

Experiment: A week without Google

In the coming week starting from the end of this class we will attempt to make it through a whole week without using any Google service. Not Google Search, not Gmail, not Google Talk, not Google Video, not Google Docs, not Google Maps, not Google Earth, not Google News, not Google Groups, not Youtube, not Google Video, not Blogger, not Picasa, not Google Calendar, not Google Checkout, not iGoogle, not Google Translate, tot Chrome browser, … you get the point.

It’s not going to be easy and hence we will not attempt to create an unfeasible challenge. We will keep a promise to each other to follow some rules:

1. Whenever we are passively exposed to Google content (an embedded Google video, map, and so on…) we post that link to del.icio.us using the tags ‘nmrs08’, ‘weekwithoutgoogle’ and ‘ambushed’ (+whatever else you want to include)
2. Whenever we break and use a Google service, we report about it to the blog, as a comment on this post.
3. If we totally break altogether, we write a post about it as soon as we decide to pull out, summarizing the experience.

We will also try to support each other in the process by:

1. If you use Gmail, please make sure to set a forward on your email to another email service (either on or offline). Please do that as the first thing you do after this class, and not later than 9pm.
2. Every time you are about to use Google, and find a way around it, try to propose the alternative to the class by tagging the alternative with the tags ‘nmrs’, ‘weekwithoutgoogle’ and ‘dodged’.
3. Share tactics on the blog. Work together to try to make it.

This is trust based only, but the student who will manage to take this challenge on and make it through the week will win the class’s medal of honor.

Good luck!
(we’re going to need it)

1. Come up with a subject for your second log your own free-formed New Media Travelogue.
   • This time you will research a media environment you are familiar with. It can be a web service you use, a cellphone application, a media phenomena you are familiar with (telephony hacking, or Google Bombing for example), a social networking site, a media art movement, a mailing list, an audiovisual music scene you’re involved with, whatever, in or out of the web.
   • You will develop a networked research, consisting of a thread running through different parts of your chosen environment. You will have to develop your own process of travel and navigation on one hand and log and report on the other.
   • This Travlogue will continue for 3 weeks (until Oct 7th)
   • Write one short post introducing your desired ‘travel destination’. You will present it by yourself.
   • Comment on at least two other posts, ideally giving feedback and reference to more info on your fellow student’s subject of research.
   • Feel free to explore and surprise yourselves (and us).
2. Follow the rules for the class challenge – A week without Google
3. Required Reading:
   Cory Doctorow, Scroogled
4. Suggested reading:
   Nicholas Carr, The Omnigoogle
   Tom Owad, Data Mining 101: Finding Subversives with Amazon Wishlists
5. Ari:
   • Read the three articles
   • Summarize it for us in a nicely accessible post to be published by Sunday, ideally running some threads between them.
   • Be prepared to present the articles in class
   • Post to del.icio.us some links that expand the discussion either about the text or about key themes in it.
   • Enjoy.

Remember! You’re not allowed to Google it!

There is no doubt that the proliferation of the internet and the digital world in its’ entirety reflects the quantum strides the human race has made in the past half century.  Many tend to argue that these technological strides are blessings that give us all access to virtually unlimited information at all times.  They maintain that the internet has has been an aid to the human race across a spectrum of facets, which it undoubtably has been.  And after all, in the past fifty years, the human race has
accomplished what our generation’s parents believed to be impossible time and time again.
Unfortunately, along with opportunities to go shopping without leaving your house, make interesting buddies and chat, come a slew of opportunities for the criminal and the evil to capitalize on the nature of the online world.  As Jes mentioned in her blog, the presence of radical terrorist factions, and hate groups is overwhelming.  And as a result, the privacy of the general public
becomes compromised.  Chatrooms become heavily survielled.  Emailed are ravaged through.  

It seems that every time an advance in technology is made, our freedom to use these technologies in way in which our privacy is protected, becomes more and more limited.  Yes, cell phones have made the world a safer place.  Yes, you can be digital present as long as your battery is fully charged.  I don’t take issue with the fact that I am liable for being reached at all times on a cell phone(very often by people I don’t want to talk to).  I don’t take issue with having to respond to an email within an hour of being sent.  I take issue with the faith that we all put into the safety and privacy of the information that we have online.