Summer of Drones – Ottawa

So, how exciting is this? I just came across this announcement for a local hackathon for anyone interested in hacking AR Drones. I’m hoping to attend, and I’m planning to take a bunch of vids and pics and post them here. Anyone interested in hacking Parrot drones for fun should plan to register (the registration is not yet open).

If you’re wondering how this will work here’s a link to a recent drone hackathon hosted in San Francisco.

Regulating Biotechnology: At the Interface between Science and Ethics

Marc Saner and I are presenting at the third annual International Workshop on Regulating Biotechnology: At the Interface between Science and Ethics. Our presentation is based on a  report that we’re currently working on for Health Canada about definitions of Synthetic Biology. The report is not finished yet, but will be released in the coming weeks.

The workshop itinerary is here, and I’ll put a link to presentations when they are made available. It looks to be a very interesting day.

New Report on eHealth Solutions for Patient Engagement and Empowerment

I’ve (finally) released my report: Engaging and Empowering Patients with Consumer eHealth Solutions – Fostering Patient Expertise. The report is the product of the CIHR Science Policy Fellowship I recently completed. The report was jointly sponsored by Health Canada. The report focuses on analyzing the potential of eHealth solutions for patient engagement and empowerment in a patient centred health care system.

The full report, which outlines several policy recommendations and considerations, is available here.

Here’s a snippet from the Executive Summary:

We are told that we are on the precipice of a health care crisis, and that in order to avoid it we must “bend the health care cost curve”. eHealth technologies are one way of bending the cost curve, in that they promise to enable novel efficiencies in the health care system. One such set of efficiencies relies on engaging and empowering patients in a model of delivery referred to as patient centred care (PCC).

PCC is meant, in part, to change the role of the patient within the health care system from “passive recipient” of health care services, to “active participant” in their own health care and in the health care system more broadly. Evidence suggests that empowering patients in this way produces benefits both for the patient (e.g. better health outcomes, higher satisfaction with care), and to the health care system (e.g. new efficiencies in health care delivery).

Consumer Health Solutions (CHSs) are technologies that can engage and empower patients, helping them to become more active participants in their own health care and in the health care system more generally.

However, PCC can be implemented in practice along a continuum of patient engagement and empowerment. At the “thin” end of the continuum, few of the benefits of PCC are realized. At the “thicker” end, however, patients are more likely to reap the beneficial outcomes associated with PCC. At this end patients are also referred to as “experts” in their own care.

“Patient expertise” is a useful concept for thinking about the link between PCC and the outcomes associated with PCC. Patient expertise is holistic in the way that it ties the various features of PCC together, and also emphasizes the role that patient communities can play in engaging and empowering patients, as they strive to better manage their own health care.

A better understanding of patient expertise allows for a focused and nuanced understanding of PCC. Understanding patient expertise can also help to explain how patients move from being relatively unempowered and unengaged, to highly empowered and engaged within the health care system.

The language of patient expertise supports a detailed analysis of the features designed into CHSs, as they relate to fostering patient expertise and delivering health benefits associated with PCC. By examining a CHS’s features it is possible to analyze in what respect it might foster patient expertise, and to gain some insight into the CHS’s likelihood of delivering beneficial health and health system outcomes. Examining a CHS’s features through the lens of patient expertise also makes it clear that CHSs can foster patient expertise in ways that traditional health system arrangements likely cannot, particularly because of their ability to enable the formation and maintenance of robust patient communities.

The key takeaway of this report is that:

“Patient Expertise provides a conceptual lens through which we can analyze Consumer Health Solutions (CHSs), in order to understand how to effectively leverage CHSs to deliver the benefits associated with Patient Centred Care (PCC) and patient expertise.”

It’s Time to Move Beyond "eHealth"

The many faces of eHealth

Is the recent media buzz over findings that some docs seem to order too many tests electronically a reason to abandon eHealth? Not really. Here’s why…

Eons ago (I’m speaking in technological time), someone thought it was a good idea to adopt information communication technologies (ICTs) to health care, and they called that project  “eHealth”.  Back then eHealth was probably a good name, too: the health care system was primarily paper based, while most (okay all) other sectors, and society at large, were rapidly adopting electronic information systems as part of their daily activities. Putting the “e” in health was a way of explaining what the big idea was to the average person who, at the time, was still wrapping his head around email (another industry that has since been “e-ified”). At the same time, arguing that we should move towards eHealth was a way of suggesting that the various players in health care—nurses, doctors, hospital administrators, average Canadians, and so on—could benefit from ICTs.

Eons went by (technological time once again), and the Internet changed the world, for better and worse. On the balance, I tend to argue that the benefits of these changes outweigh the bad stuff. Email, Google, Wikipedia, iTunes and, yes, even Facebook, are just a few of the refined technologies that appear to have come out on the positive side of the balance.

Health care, on the other hand, is still in its Internet infancy. Most health information systems are not fully digital, most of those that are do not talk to one another, most doctors do not use electronic health records, and a critical group of players—ordinary citizens—have little or no access to digitized versions of their health data.

It’s bizarre and ironic, given all the beneficial stuff that’s happened over there on the Internet, that some people are still questioning whether or not eHealth, as a broad initiative, is worth investing in. But it seems that is, indeed, the going concern of some prominent health commentators.

Most recently (and quite ironically) the media went into a state of frenzy over an article published in Health Affairs, which appeared at first glance to suggest that doctors with access to electronic test results ordered more tests. Upon reading the report (more likely, I suspect, the press release by Health Affairs), media outlets like the Washington Post, the New York Times and the CBC ran stories (which found their legs on social media sites to a large extent) suggesting that the study legitimately called into question the entire eHealth agenda.

In response, Julia Belluz posted an article on the MacLean’s blog “Science-ish”, that was, in part, a call for more research into the benefits of eHealth.

Fair enough. Not much research has been done on eHealth technologies, and it’s always nice to have evidence to back up your claims. This lack of evidence might seem shocking considering the nearly $4 billion that has been spent on eHealth in Canada to date. I take no issue with a call for more research into the various technologies that comprise the larger system we still refer to as eHealth.

However, Belluz didn’t merely call for more research into eHealth. In addition, and in contrast to her colleagues, she pointed to the many obvious problems with the paper that had caused so much of a stir in the first place. Quite rightly, she dismissed its findings almost entirely.

Why? The paper says little about the technology it studied (there were serious problems with the study), and next to nothing at all about “eHealth” in general.

In addition to the problems Belluz points to, I’ll add the following caveat for anyone reporting on a study related to a particular “eHealth technology”: The fact that software X results in negative consequence Y, is not evidence that it does not have any benefits, nor is it evidence that can generalize to eHealth more broadly. It is evidence that software X had negative consequence Y. It’s evidence of nothing more, nothing less.

Unfortunately, the journalists and editors at the Washington Post, The New York Times, and the CBC (among others), seem to have overlooked this important relationship between any particular eHealth technology, and the broader project of eHealth.

An analogy might be useful. The fact that there is evidence that Facebook raises considerable privacy concerns (and even violates individuals’ privacy in many cases) is not evidence that there are no benefits associated with using Facebook (though there may not be). The fact that Facebook raises considerable privacy concerns is also not (most emphatically not) evidence that the Internet is of no benefit to society.

But that is precisely the argument those journalists made against eHealth in their articles. They argue that because there are a couple of pieces of software out there that seem to offer little or no benefit, or that seem at first glance to have the opposite of an intended effect to the health system, that we should be wary of the entire eHealth project.

The problem here seems to be in understanding what eHealth consists of. It is not a single piece of software, any more than Facebook is the Internet. eHealth is the broad and multi-faceted application of ICTs to the health care system. It is much more than any one (or thousand) of its components.

Furthermore, journalists and policy makers need to be measured in the demands they make for evidence. For example, demanding evidence of “eHealth’s benefits”, as if you can provide such a thing, is very much like demanding evidence of the benefits of the Internet. It is a fool’s game if ever there was one.

What we can do is look at particular technologies, used in particular places, by particular people, and try to gauge if they are delivering certain benefits, or not, in that context. If they are, great! We can then try to leverage those benefits in other contexts.

What happens if a technology looks like it isn’t delivering on a particular intended benefits, as seems to be the case in the study so widely quoted? Should we call for the abandonment of eHealth?

That would be hasty. In fact, it would be hasty even to call for the abandonment of that particular technology without first balancing the known problems against the known benefits (something the paper did not do). It might turn out that that technology is not beneficial overall. So be it. Most technologies end up in the dustbin—but that seems just to be a consequence of pursuing new technologies. It might also turn out that the benefits outweigh the costs, in which case the appropriate response would be to research and tweak the program to try to improve whatever is causing the unwanted effect (too many tests in this case).

But that is a very different type of research than “studying eHealth”.

The fact is, nobody really “studies eHealth”, just like nobody really “studies the Internet”. Rather, they study bits and pieces of them—social networking technologies; routing algorithms; communication standards, privacy and so on—to try to come to some simple, hopefully interesting and helpful, conclusions.

The upshot is that recognizing where “eHealth” research fits into the eHealth story says a lot about how the media ought to communicate scientific research more generally. A journalist might point to a study showing that a particular piece of software that allows American doctors practicing at such and such a hospital to order tests electronically, results in more tests ordered. That journalist can then say something about it being problematic that American doctors in such and such a place ordered too many tests (if that is, in fact, what they did). That journalist cannot say (with a straight face, anyway) that that study suggests “eHealth” fails to produce benefits generally.

Similarly, when I point to this evidence, and this, which suggest that medication errors drop significantly (a statistical claim) when electronic ordering systems are used, I can only conclude particular things. I can conclude (assuming the research was good…and it appears to be, despite the usual worries about bias and generalization) that the particular software systems being studied tended to reduce medication errors in those instances under study. I can hypothesize that if other health care institutions adopt these technologies, then fewer medication errors will be made. If they adopt them in particular Canadian health care settings, I can hope that Canadians will benefit sinilarly, in that they will experience fewer medication errors.

Though the research on drug ordering systems says very little about eHealth insofar as eHealth means the broad application of ICTs to health care, it does suggest that we would be wise to look into electronic drug ordering systems for our hospitals. Which is exactly the kind of thing that I suspect hospital administrators, the folks at Canada Health Infoway, Provincial and Territorial governments, and others who want to realize some of the obvious benefits they’ve experienced over there on the Intenet, are doing with some of the $4 billion dollars we’ve collectively invested in eHealth.

Journalists need to move beyond claims that “eHealth is beneficial,” or that “it isn’t”. They’ve certainly moved beyond claims that “the Internet” is such and such. Evidence supporting such broad claims isn’t likely to appear, however much it would simplify the storytelling. Journalists need to give up the eHealth moniker, and instead talk about the many eHealth technologies for what they are, specific technologies, bits and pieces of a very complicated and ever changing puzzle. Each one of those technologies has the potential to confer benefits, or not. Sometimes we’ll get the technology right and realize those benefits, sometimes we won’t.

Characterizing “eHealth” according to the qualities of a few transitional technologies does very little, if anything, to inform the public about their health care or the system that delivers it. Nor does it help the public decide whether or not eHealth is a worthwhile endeavour.

Jason Millar is a PhD Candidate at Queen’s University, and currently holds a CIHR Science Policy Fellowship in eHealth. He studies in his corner of the eHealth world, trying to figure out how various consumer health technologies ought to be used to engage and benefit patients.

We Robot Conference – Miami

I’ll be attending the inaugural We Robot conference at the University of Miami School of Law in April, to present a paper titled “Delegation, Relinquishment, and Responsibility: The Prospect of Robot Experts”. It looks to be a very exciting conference dealing with legal and policy issues related to robots.

The paper is co-authored with Ian Kerr, who holds the Canada Research Chair in Ethics, Law, and Technology at the University of Ottawa Faculty of Common Law.

Debating the Royal Society's End-of-Life Decision-Making Report…Well, sort of.

The Royal Society recently published their report on End-of-Life Decision-Making in Canada, written by an expert panel commissioned by the Society. It is well worth a read if you are interested in the topic.

Not surprisingly, there has been some debate featured in the media following the release of the report. Also not surprisingly, the most vocal opposition to the report has come from various anti-choice interest groups, and individuals well known for campaigning against end-of-life options like assisted suicide on religious doctrinal grounds. As such, the anti-choice campaigners are not particularly interested in engaging the facts in the report (facts often get in the way of paid interests), so much as they are interested in discrediting a report that makes a strong case against their preferred (often commissioned) policy positions.

The debate is well documented in a blog maintained by one of the experts on the Royal Commission panel–Udo Schüklenk. Schüklenk, after having met with opposition from the interest group representatives (among them journalists, and a law professor who has long masqueraded as a bioethicist) challenged readers of his blog to find argumentative errors in his detractors’ positions (such as this, and this), the kinds of errors any first-year university student is (or should be) taught not to make.

Not surprisingly (again…) they found many such errors, and Schüklenk details them here.

Schüklenk makes the argument that many of his detractors are not really interested in honest debate on the issue since they refuse to even acknowledge or engage facts that obviously contradict their views. (The law professor I referred to ended up regurgitating many of the interest groups’ claims, regardless of their having been thoroughly refuted by facts in the report.) He suggests we should therefore not refer to the kind of back-and-forth that interest groups engage in as intellectual debate. I couldn’t agree more.

Unfortunately, debate in the media has to a large extent become an exercise in delivering lines. Participants are not expected to engage each others’ propositions. They are expected to find opportunities to deliver the talking points they have rehearsed, regardless of what has been said by their fellow debaters.

That kind of back and forth can hardly be called intellectual, it is certainly not debate.

If my point seems fuzzy, perhaps this Monty Python skit will add some clarity.

My suspicion is that the kinds of opponents Schüklenk has been pitted against would sympathize with John Cleese’s character. “Yes, that is debate,” they might say. They would have to, in order to maintain any semblance of credibility given their style of ‘debate’. Whether siding with Cleese would, or should, have the desired effect is another thing entirely.

In deciding on policy for End-of-Life Decision-Making we need to demand that real debates be had. The flippancy Schüklenk exposes ought not to be accepted when the issues at stake are as important as they are in this case.

Setting policy requires honest engagement with the underlying issues at hand. It requires considering all of the evidence, where there is evidence to consider. Most importantly it requires real debate between people who are willing and able to engage each others’ ideas and propositions in a way that recognizes first that something has been said by another participant, and second that what was said was understood. Neither of those is apparent in the arguments posed by the aforementioned opponents to the report. They should not be considered legitimate participants in the debate. There are other, more credible, opponents who could shed light on the report’s shortcomings while engaging in real debate.

The Extremes and In-Betweens of Synthetic Biology

I was recently asked to blog about a conference on Synthetic Biology. Here’s a teaser. You can read the full entry here.

When a cartoon is in the early stages of production artists craft the storyline by creating a series of still images. Those images, referred to as “extremes”, depict characters in their most exaggerated positions and are often used in the final stories as visual hooks and punchlines for the audience: anvils are falling on heads; bodies are magically suspended miles above ground; tears are streaming from eyes. Chuck Jones, who famously created the Road Runner and Wile E. Coyote characters for the Looney Tunes series of animated shorts, was a master of extremes. In the example here, Wile E. Coyote has just suffered his first ever T.N.T. mishap at the hands of the Road Runner. In addition to hooking the audience, extremes can be thought of as caricatures of the characters and plot.

Read the full post here.