Monthly Archives: October 2009

CRTC issues net neutrality ruling

And here it is.

I won’t have time to fully parse the policy decision till tonight, but my initial impression is that it’s a feeble gesture in the right direction (that being net neutrality), clad in nationalist bombast (“Canada is the first country to develop and implement a comprehensive approach to internet traffic management practices”).

At a glance, it seems that ISPs are still allowed to “traffic shape” but out and out throttling is discouraged unless the ISP feels it’s really necessary. Consumers are now supposed to be informed if their ISP is going to change traffic shaping practices, and consumers can complain, which will then possible trigger an investigation that will ask the ISP to explain what and why. There are also some new privacy guidelines for deep packet inspection.

So ISPs are still allowed to throttle, and to conduct deep packet inspection, but they have to jump through a few more hoops to do so now than they did before. There are also some new restrictions about wholesale ISP services, which I hope will help small ISPs remain competitive and viable.

Any other thoughts on the ruling would be very welcome.

Some initial coverage:

CBC coverage here (CBC’s been hot on the NN file since the throttling of Next Great Prime Mnister).
Excerpt:

“Big telecommunications companies such as Bell and Rogers can interfere with internet traffic only as a last resort, the CRTC says. Instead, they should use “economic measures” such as new investment and usage limits to combat congestion on their networks.”

Michael Geist’s take is here (Geist obviously knew some things I didn’t know about what was coming down the pipe on this one!  <–Unsurprising):

Impressively optimistic excerpt:

“The CRTC’s net neutrality (aka traffic management) decision is out and though it does not go as far as some advocates might hope, it unquestionably advances the ball forward on several important fronts…Today’s CRTC decision signifies that traffic management is not a free-for-all and the days of ISPs arguing that they can do whatever they please on their networks is over.  That said, it also guarantees that traffic management practices such as throttling will continue and it is going to take more complaints to concretely address the issue.”

More to come, after I’ve had a chance to read & digest more.

-Greyson

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Privacy vs. Data: Electronic Medical Records (EMR)

My province, British Columbia, is one of many jurisdictions currently in the process of implementing eHealth, which is (in part) basically a large scale, provincially-coordinated  implementation of the Electronic Medical Record (EMR).

And I’m gonna come out and say it: I’m a privacy advocate who is pretty much in favour of government-administrated EMRs.

(Of course, there is a catch…)

I work with health data. I mean, I don’t actually lay my own grubby librarian hands on most of it, but I work in a data-rich environment and with researchers who are analyzing lots of health system data. This stuff is highly privacy sensitive. There are parts of my office I’m not even allowed in without an escort, passing a security cam, and signing a log. And that is how it should be.

I sincerely appreciate the tension between

a) the researchers who want data access and linking in order to do good research and improve health and healthcare, and

b) data stewards and privacy officers who want to protect our privacy first and foremost.

Sometimes the privacy laws and regulations make it harder to do good research, but that’s part of the process.

For example: here, we’re not allowed to identify subpopulations with particularly diagnoses anymore, to survey them, because that’s considered invasive of their privacy. Fair enough – I wouldn’t necessarily want to be subject to lots of survey requests from people who somehow found out I had disease X. However, this also understandably makes it harder to research disease X, when we can’t just pull a representative sample (or all patients) to survey/study.

Both sides – the research/access and the privacy protection side – need good advocates in order to find the best (or at least an appropriate) balance. And I do believe in that balance.

It’s kind of like how in domestic violence shelters there’s often a staff member advocating for a mother who is in shelter, and another staff members advocating for the mother’s child. Usually what’s best for mum (the primary shelter client) is best for the whole family, and there’s no apparent need for the child’s advocate. But sometimes that’s not the case, and both mum and child deserve a strong advocate who is primarily concerned with their welfare, in order to strike a balance and find a solution that is in the best interest of most people.

I’m not a perfect privacy advocate.  I do not believe the government having any information on me is necessarily a bad thing. Sure, there are days when I dream of living off the grid and having babies who never get social insurance/social security numbers. Mostly, though, I think of myself as a realist whose goal is to help the government find an appropriate balance of privacy and data.

Why? Well, because I do have some faith in evidence based practice, despite the somewhat flawed way that medical evidence (the EBP “gold standard”) has been implemented. So I do want the government to have some data on me, because I certainly don’t trust private companies more than I do public institutions, and without data, there is no evidence.

So, when I think of EMR, I think first of the good that can come of it.

Yes, there is the clinical potential: possibly reducing adverse drug reactions/interactions, and the like. Yes, likely improving communication between docs working with the same patient. But beyond those (mostly unproven) claims of the potential of the EMR, the potential for research is phenomenal, really. Even the potential for a patient to finally have access to their own, fairly complete, medical records is pretty awesome.

THEN come the “buts”: the caveats, the necessary policies and procedures to ensure optimal stewardship of this type of linkable – and in some cases already linked – data.

I have to say, up front, that there is absolutely the risk of significant breach of privacy with EMRs.

BUT most of this risk already exists. We already carry electronic data. Several existing individual databases that will combine to form the EMR in this province are already personally identifiable and potentially incriminating. Take PharmaNet, for example. PharmaNet tracks every prescription dispensed in the province. It’s made possible some research in BC that hasn’t been done anywhere else (e.g., this cool stuff that some of my colleagues are doing). However, there is certainly a need for good data stewardship, as there’s a chockload of sensitive information in that database (and there have been some noted breaches – e.g. in this .doc from FIPA).

Combining multiple database may raise the ease of identification, and give more information, but what my real concern is isn’t the linking and interoperabilityof the datasets (because, really, if PharmaNet shows an AZT script, does anyone really need corroborating doctor records to out you as HIV+?), but the privacy and security policies and procedures of the data stewards. This is the same concern today as it will be once the EMR is implemented in my province.

So no, I don’t want to Opt Out. Call me deluded, but I want all health care professionals who treat me to have access to appropriate data on my health history. I want the ER staff, when I arrive on a stretcher the day a crazy driver finally plows into my bicycle, to know about my life-threatening medication allergies ASAP.

And I’m not alone. Heck, there are people who want an EMR badly enough that they are trusting companies like Google and Microsoft with their medical information! I certainly can’t claim to fully trust my government, but I’ll take the Ministry of Health over a publicly traded company any day, when it comes to my health care and private information!

HOWEVER, I do want a Real Dialogue and some transparency about the handling of the EMR, as well as other government data. Because while I’m not signing on the Opt Out bandwagon, I do think the concerns about:

  • lack of government transparency,
  • lack of a publicly-available privacy policy governing EMR data sharing,
  • selection of a US based company managing/holding the information,
  • and lack of clarity regarding who will have access to which modules/portions of the EMR

are very valid and legitimately alarming.

We have some pretty good models of data stewardship here. Let’s learn from them, and listen to our privacy advocates and commissioners, as we move toward the inevitable EMR.

-Greyson

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Filed under digitization, government, Health, privacy

Academic librarians and research: a response

Before you read this post, go here and read Mark Rabnett’s blog post, ““For academic librarians what’s hard to reach is time for research.”

I started leaving a comment there, but soon realised that my comment was likely to challenge the original post in length. Thus, I figured I’d just post a response here and link back. What follows is my more fullsome response to Mark’s post. Feel free to join the conversation either in comments below, or on your own blog, linking back.

Mark, since I first read this post, it has kept coming back to the front of my mind. Very timely.

As you probably know, I don’t have faculty status, in my unconventional, embedded-librarian job. Ironically one of my hesitations when I consider applying for other, more traditional academic library type positions, is that I know that in order to obtain faculty status I will likely lose the research time I currently enjoy.

You really hit the faculty-status-but-not-really-faculty nail on the head when you point to the conflicting expectations on academic librarians to keep specific hours, far beyond what other faculty are obliged to do, like office staff, yet also produce independent research (some types of which necessarily take one out of the office).

I’m sure the degree of autonomy varies greatly among libraries, and perhaps even among individuals at the same library system, of course. I wonder, though, how many academic librarians have as few time-bound duties as a typical “teaching” faculty member (i.e. regular office hours, regular class times, but beyond that whatever you need to get the job done goes).

I would add to your post a degree of despair at the quality and amount of actual research training and experience I have seen library school and library jobs naturally providing. If we are to be a more evidence-based profession, the quality of research training and mentorship really must improve. In my opinion, that – not more workplace policies to look over our shoulders – is what will improve librarians’ research.

I’m sure you are aware of this, but Manitoba’s policy of 12 “research days” seems generous compared with many university libraries. I recently asked a high-level administrator from a university library acclaimed for reinventing their librarian jobs where research fell in the scheme of things (since conducting research was not apparent in the new job descriptions). Said administrator told me that while it was a critical part of T&P, librarians’ research would typically be conducted outside a normal 40-hour work week. She likened this to academic faculty who are not limited to a 40 hour work week, but as you point out these academic faculty do not typically have a prescribed 40-hour week at all.

I know there are librarians who do not want strict requirements to do research, and do not think it’s necessary to conduct research in order to be a good academic librarian. My own experience has been that unless I do research, faculty certainly do not see me as a peer, and that collaborating on research has helped me create valuable relationships with faculty members.

As far as academic freedom is concerned, apparently this is not just a Canadian issue, as John Buschman has just published an article on this very topic – the watering down of academic freedom for academic librarians – in the AAUP’s “Academe Online: (link here – which I should say I only know about from a tip on the Library Juice Press blog).

-Greyson

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