Open data projects should start with user needs

Open data projects need to cross a utility/relevance chasm before they gain uptake. Tom Steinberg of MySociety, a prominent UK civic app development team, argues that app contests and hack days aren’t enough—you need to focus on concrete projects, laser-focused on real user needs.

Why is a user focus critical?

“What people never, ever do is wake up thinking, ‘Today I need to do something civic,’ or, ‘Today I will explore some interesting data via an attractive visualisation.’ MySociety has always been unashamed about packaging civic services in a way that appeals directly to real people with real, everyday needs. I gleefully delete the two or three emails a year that land in our inbox suggesting that FixMyStreet should be renamed to FixOurStreet. No, dude, when I’m pissed it’s definitely my street, which is why people have borrowed the name around the world.

“We learned this lesson most vividly from Pledgebank, a sputtering site with occasional amazing successes and lots and lots of “meh.” The reason it never took off was because, unlike the later (and brilliant) Kickstarter, we didn’t make it specific enough. We didn’t say “use this site to raise money for your first album,” or “use this site to organise a march.” We said it was a platform for “getting things done,” and the users walked away in confusion. That’s why our new site is called FixMyTransport, even though it’s actually the first instance of a general civic-problem-fixing platform that could handle nearly any kind of local campaigning.”

That might mean, Tom argues, that it makes sense to bet bigger on fewer horses:

“MySociety got lucky…its second ever grant was for…about a quarter of a million dollars. It was amazing luck for a small organisation with no track record…Those days are gone…but governments everywhere should note that that funding of this scale got us right through our first couple of years, until sites like WriteToThem were mature and had proved their public value (and picked up an award or two).

“In the subsequent few years, we saw the ‘thousand flowers bloom’ mentality really take over the world of public-good digital funding, and we saw it go way beyond what was sensible. Time and again, we’d see two good ideas get funding and eight bad ones at the same time because of the sense that it was necessary to spread the money around. It would be great if someone could make the case to public grant funders that good tech ideas — and the teams that can implement them — are vanishingly rare. There is nothing to be ashamed about dividing the pot up two or three ways if there are only a few ideas or proposals or hacks that justify the money. The larger amounts this would produce wouldn’t mean champagne parties for grantees, it would mean the best ideas surviving long enough to grow meaningful traffic and learn how to make money other ways. After a long road supported by public grant funding, mySociety is now 50% commercially funded and 50% private-grant funded, but we’d never have arrived there without being 100% public-grant funded for the first couple of years.” (source)

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How to run a hack day

Science Hack Day San Francisco

Science Hack Day San Francisco 2010

We’re considering running a half-day event for campus developers and webmaster to learn about and tinker with UCSF Profiles’ open APIs and OpenSocial development platform. Whether you call it a hack day, a hackathon, a code-a-thon, or a developer day, the idea’s the same—bringing together technologists to learn, experiment, create, and share.

So how do you run a hack day? Here are some essential hackathon to-dos from my friend Sumana Harihareswara, based on work done for the Wikimedia Foundation:

  • A public wiki page stating the date, time, and venue, and specifying that everyone is welcome. Also tell people what to bring (laptop and power cord), ask them for topic ideas, and ask them to put their names down — no obligation.
  • Outreach/publicity drive, starting at least six weeks in advance, to relevant communities. Ideally you’d get the word out to technical interest groups, local user groups, consultants and other businesses in the industry, individuals whom you want to attend, professors and colleges and universities and technical schools and trainers, email lists, and (if relevant to your audience) newspapers.
  • Some experienced developers. I don’t know the exact ratio, but perhaps a fifth of your participants should be people who have had some experience in developing Wikimedia/MediaWiki stuff, loosely defined. You need some seeds.
  • Documentation tools & some people who will take notes with them (more below).
  • Lightweight tracking. At some point, somehow, at the event, get every participant’s name and email address. That way you can follow up and continue encouraging them after the event.

Because this would be our first time sharing our UCSF Profiles APIs with a wide internal audience, we’ll also need to get our own house in order, to make sure we’re ready to share:

  • Document every API that will be presented, and ensure that it’s comprehensible to our target audience
  • Develop sample “hello world” applications, so our audience can get started quickly, and pull apart working examples
  • Finalize policies around API licensing and data reuse, so developers aren’t left in the lurch if they want to build on our work

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Cigarette warning labels around the world

The FDA’s new cigarette warning labels have been getting a lot of buzz, underscoring the role of design in public health communication. The new designs take up half the cigarette pack, and 20% of the size of ads. According to the Wall Street Journal, the FDA estimates that the design will reduce the number of smokers by over 200,000 in the first year after launch, based on the impact of new warning labels in Canada.

Cigarette Health Warning ImagesCigarette Health Warning ImagesCigarette Health Warning ImagesCigarette Health Warning Images

There are a variety of approaches to tobacco packaging warnings, but bold graphic warnings are clearly the emerging international consensus. Here are some examples from around the world:

Brazil:
Cigarette warning labels

Thailand:
Gruesome

Click to see more…

Pharma and Social Media

Pharmaceutical companies continue to struggle with patient interactions in today’s social media environment.  While a number of pharma and biotech firms have a presence on social platforms, the conversation has traditionally been one-sided.  The companies speak, and the consumer can only listen.  However, that’s now starting to shift.

Pharma brand marketers that disable comments on their Facebook pages are in for a change. As predicted, Facebook will no longer allow pharma brands – which are typically highly risk averse when it comes to discussions about their drugs and products in social media environments – to turn off commenting on their pages.[via]

Part of the challenge is a regulatory one.  Industry continues to wait for guidance from the FDA on how social media should and should not be used.  Although the FDA held a hearing on this topic back in 2009, they continue to delay issuing any guidance (which was most recently supposed to be available in Q1 2011, but that didn’t happen).

For now, it seems that pharma and the social media providers must continue to work this out themselves.

How Can We Make Biomedical Studies More Inclusive?

Even in 2011, persons with disabilities (more than 47 million Americans)
are still “ profoundly underrepresented in mainstream health research”. In their recent article, the researchers Ann Williams and Shirley Moore propose a “Universal Design of Research” (UDR), which allows “routine inclusion of persons with disabilities in studies, without the need for adaptation or specialized design.”

They offer a few guidelines and ideas to support researchers in designing materials in accessible formats. Some good food for thought as the new UCSF Participant Recruitment Service (PRS) takes shape. Here is what they propose:

… provide multisensory, flexible options for recruitment, research instruments (such as questionnaires), measurements, and responses from participants, with reasonable accommodations that invite and facilitate participation by persons with disabilities; and when you do not know how to include someone with a disability, consult someone who does (the potential research participant, another person with that disability who is knowledgeable about the range of methods people use for living fully with it, or a professional who works with persons who have that disability). 

Practical guidelines for implementing the Universal Design of Research include:

… (i) plan multiple options for people to learn about, respond to, and arrive at opportunities to participate in research; (ii) provide multiple means to communicate the information in research instruments and instructions for participants; and (iii) provide multiple means of responding to research instruments and self-management interventions.

I wonder what our PRS team thinks about these ideas. And, do we know of other successful approaches, web-based technologies or great examples we could share?  Ann Williams and Shirley Moore are looking for ideas to develop comprehensive guidelines.

Addressing health literacy

Clear communication is hard enough as it is, but the stakes are particularly high when it comes to health communication. According to a recent story on health literacy in the Washington Post:

“An elderly woman sent home from the hospital develops a life-threatening infection because she doesn’t understand the warning signs listed in the discharge instructions. A man flummoxed by an intake form in a doctor’s office reflexively writes ‘no’ to every question because he doesn’t understand what is being asked…Studies have linked poor health literacy, which disproportionately affects the elderly, the poor and recent immigrants, to higher rates of hospital readmission, expensive and unnecessary complications, and even death. A 2007 study estimated the problem cost the U.S. economy as much as $238 billion annually…[E]ven highly educated patients are affected, particularly if they’re stressed or sick. She cites the initial reaction of former New York mayor Rudolph Giuliani, who thought he was cancer-free when his doctor told him several years ago that his prostate biopsy was ‘positive.’ Actually, a positive biopsy indicates the presence of cancer. ” (via)

The story references Health Literacy Advisor software, a Microsoft Word plug-in that “operates like a spell-checker and scans a document for its readability and its health literacy. When it finds words, terms, or writing that clogs comprehension or reduces health literacy, it highlights these terms and offers ‘health literate’ alternatives.” While software’s not a silver bullet, it might help get us to a point where verifying the readability/usability of critical health communication might be considered at least as important as checking for typos.

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Textual usability in government

Long form web readingEnjoy obfuscated IRS forms? You might soon be disappointed. President Obama signed The Plain Writing Act of 2010 in October, mandating that federal agencies use writing that is “clear, concise, well-organized.” The Office of Information and Regulatory Affairs just released their guidance on how federal agencies should comply with the act, mandating that agencies train employees to write plainly and clearly, and designate a senior official to ensure implementation.

PlainLanguage.gov has great examples of how much plain writing can improve textual usability:

A directive from the National Marine Fisheries Service:

Before: “After notification of NMFS, this final rule requires all CA/OR DGN vessel operators to have attended one Skipper Education Workshop after all workshops have been convened by NMFS in September 1997. CA/OR DGN vessel operators are required to attend Skipper Edication Workshops at annual intervals thereafter, unless that requirement is waived by NMFS. NMFS will provide sufficient advance notice to vessel operators by mail prior to convening workshops.”

After: “After notification from NMFS, vessel operators must attend a skipper education workshop before commencing fishing each fishing season.”

A training document from the Veterans Benefits Administration:

Before: “The second change in the law provides an opportunity to resume work without affecting your entitlement to compensation at the total disability rate. However, this alteration in the law does not modify the requirement that you immediately report any employment to this office.”

After: “The law now says you can go back to work without losing your ability to receive total disability compensation. You still have to let us know right away when you do go back to work.”

An NIH factsheet for the general public:

Before: DNA test for Charcot-Marie-Tooth disease: Geneticists and cell biologists have exploited a neurologically impaired “pale and trembling” mouse strain, in conjunction with new genomic technologies and information from the known mouse and human chromosomal DNA sequences, to rapidly identify a mutation that causes a subtype of the Charcot-Marie-Tooth neurological disorder that affects one in 2,500 people in the United States.  Knowledge of the specific gene defect will enable development of a DNA test to confirm the diagnosis in patients and predict risk for family members.  The disorder presents with progressive arm and leg pain that that begins in early adulthood and leads to difficulty walking and manipulating objects.  The mutation in the FIG4 gene leads to a deficiency of a signaling phosphatase enzyme that is important in maintaining neurological connections in specific regions of the brain as well as in peripheral sensory and motor nerves.

After: Gene Found for Charcot-Marie-Tooth disease: Charcot-Marie-Tooth disorder, one of the most common inherited neurological disorders, affects one in 2,500 people in the U.S. Its symptoms start in early adulthood and include progressive arm and leg pain that leads to difficulty walking and manipulating objects. Using a special strain of mice, new genomic technologies, and information from the mouse and human genome sequences, researchers rapidly identified a mutation that causes a subtype of the disease. Knowledge of the specific gene defect will enable development of a DNA test to confirm the diagnosis in patients and predict risk for family members.

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