Tuesday, 23 October 2012

Information detours

Recently, I did an online transaction. It started out superficially simple: to buy rail tickets from London to Salford. But then I had to check on a map of Salford to find out which station was appropriate. And the train operator wanted to know my loyalty card number, so I had to go and get that from my purse. Then my credit card supplier wanted me to add in additional security information, which of course I don't remember, so I had work to reconstruct what it might be. A superficially simple task had turned into a complicated one with lots of subtasks that comprise "invisible work".

It's a repeating pattern: that information tasks that are, at first sight, simple turn out to involve lots of detours like this, and sometimes the detours are longer than the original task.

Occasionally the detours are predictable; for example, I know that to complete my tax return I'm going to have to dig out a year's worth of records of income and expenditure that are filed in different places (some physical, some digital). There aren't actually a large number of relevant records, but I still dread this data collation task, which is why the relatively simple task of completing the form always gets put off until the last minute.

It's both hard to keep track of where one is amongst all these information detours and hard to keep focused on the main task through all the detours and distractions of our rich information environments. I'd like a supply of digital place-keeping widgets to help with progress-tracking amongst the clutter. If they could also link seamlessly to physical information resources, that would be even better...

Saturday, 6 October 2012

Hammers and LaTeX: some challenges of interdisciplinary working

I am editing a document in LaTeX. I am just about capable of doing this, but I'm finding it a real strain. LaTeX is very familiar to many computer scientists (particularly those who need to include formal notations in their writing), but is not my document production tool of choice. For me, it is an unwieldy tool, and I am distracted from what I want to say by what I perceive as a clunky interface.

Martin Heidegger used the analogy of a hammer: when a hammer is well designed and being used correctly then it becomes an extension of the arm: it is effectively invisible. When it is too heavy for the user, or the centre of gravity is in the wrong place, or when the user hits their thumb with it, then the hammer becomes the focus of attention rather than the task at hand. The hammer is no longer invisible, but disruptive. For me, LaTeX is a disruptive tool: I'll get there in the end, but the tool is distracting me from the task.
So why am I using it? Because the people I'm working with are more comfortable with LaTeX than with WYSIWYG (What You See Is What You Get) word processors. For them, LaTeX is the invisible tool and they find it much more powerful than (for example) MSWord. So we have a very low-level, apparently trivial, barrier to interdisciplinary working: each of us finds it challenging to use the tools that the other finds most usable and useful.

The tools are just the start of the challenge: interdisciplinary working involves learning each other's language, respecting each other's culture and value system, learning how to communicate effectively and write in ways that "make sense" to the other. In CHI+MED, technologists and social scientists are working with clinicians, and we often find mismatches in understanding (e.g. some of us find error interesting, and a problem to be exposed and addressed, while others find even the suggestion that clinicians might ever make mistakes deeply threatening).  In SerenA, scientists are working with artists, and again there are differences in values, e.g. between productivity and creativity.

There is a big push towards interdisciplinary working in research, and this is really important. For example, "problem solvers" (computer scientists and technologists) who deliver innovative systems need to be able to communicate effectively with "problem owners" (medics, lawyers, journalists, and other knowledge workers) so that next-generation systems achieve their potential. It's also an exciting journey: we have so much to learn from each other! But we shouldn't underestimate the variety and magnitude of the challenges faced in interdisciplinary work. Now, back to that LaTeX...

Wednesday, 3 October 2012

The ethics of ethics

Is ethics about doing good or about avoiding doing harm?

Last week, I was chatting with a Danish colleague, who is running user studies in several European countries as part of the MONARCA project. They are developing and testing novel technologies for the detection and management of bipolar disorder. Apparently, it took 15 months to obtain ethical clearance to conduct studies in one country. 15 months!

Processes were faster in other countries, but still measured in months rather than weeks. In the UK, our experience is that the time taken to get approval to conduct user studies, even of established technologies, is highly variable, and unpredictable. But always measured in months rather than days or weeks. So it is impossible to plan a research project in detail before ethical clearance and R&D approval have been obtained. But this is a high-effort process, so you don't want to embark on it until you're sure the study will be going ahead.

The challenge of getting ethical clearance can be a real disincentive to proposing research projects on healthcare technologies. Why embark on projects in healthcare when you can do equally interesting projects in other areas that don't put such barriers in the way?

There have been some very welcome improvements over the past couple of years, with more streamlined processes for audit studies and proportionate review. But the focus is still on avoiding harm regardless of potential benefits. “VIP” is a useful mnemonic for the main concerns:

  • Vulnerability: particular care needs to be taken when recruiting participants from groups that might be regarded as vulnerable, such as children, the elderly, or people with a particular condition (illness, addiction, etc.)
  • Informed consent: participants should be informed of the purpose of the study, and of their right to withdraw at any time.
  • Privacy and confidentiality should be respected.
However, our work with clinicians and patients has really brought home to me that ethics goes beyond VIP. It should be about doing good, not just avoiding doing harm. But "doing good" might be in the long term: understanding current design and user experiences to guide the design of future technologies. And that doesn't directly address the need to engage positively with research participants. What motivates an individual clinician, patient or carer to engage with research on the design and use of medical technologies? There should be some positive benefit to participants.

For some, it will be about the "common good": about being prepared to invest time and expertise for long-term benefits. For others, there's an indirect pay-back in terms of having expertise and experience recognised and valued, or of being listened to, or having a chance to reflect on their condition, or their use of technology. There are probably many other complex motivations for participating in research. As researchers, we need to better understand those motivations, and respect them and work with them.

Why do clinician and patients engage in research on healthcare technologies? Because the perceive value – whether personal or societal – outweighs the perceived costs. Why do researchers engage in research on healthcare technologies? Ditto. The costs to all parties need to be proportionate to the benefits. So the ethics processes need to be proportionate, to encourage essential research. And as researchers we need to be mindful of the benefits, as well as the costs, to participants in research.