September 27, 2011
After working on a grant proposal with Tanu Malik and others at UChicago (and others at UCSF), Tanu found an interesting blog on Social Capital in Networks. Interesting posts.
From Bench to Webside
September 22, 2011
In his latest commentary, Andrew “Andy” Grove, former Chief Executive Officer of Intel Corporation and patient advocate at the University of California, San Francisco, envisions an eTrial system similar to Amazon.com.
….Amazon.com is a good example. A large database of customers and products form the kernel of its operation. A customer’s characteristics (like buying history and preferences) are observed and stored. Customers can be grouped and the buying behavior of any individual or group can be compared with corresponding behavior of others. Amazon can also track how a group or an individual responds to an outside action (such as advertising).
We might conceptualize an “e-trial” system along similar lines. Drug safety would continue to be ensured by the U.S. Food and Drug Administration. While safety-focused Phase I trials would continue under their jurisdiction, establishing efficacy would no longer be under their purview. Once safety is proven, patients could access the medicine in question through qualified physicians. Patients’ responses to a drug would be stored in a database, along with their medical histories. Patient identity would be protected by biometric identifiers, and the database would be open to qualified medical researchers as a “commons.” The response of any patient or group of patients to a drug or treatment would be tracked and compared to those of others in the database who were treated in a different manner or not at all. These comparisons would provide insights into the factors that determine real-life efficacy: how individuals or subgroups respond to the drug. This would liberate drugs from the tyranny of the averages that characterize trial information today. The technology would facilitate such comparisons at incredible speeds and could quickly highlight negative results. As the patient population in the database grows and time passes, analysis of the data would also provide the information needed to conduct postmarketing studies and comparative effectiveness research.
Today’s e-commerce systems started small and took nearly 20 years to develop. Adapting this kind of capability to medical information would be a monumental undertaking. Initiating and overseeing it would be an appropriate task for the professional societies. There are encouraging signs, including a call in 2004 by the American Medical Association for public registries of drugs, as well as a proposal for trials that incorporate feed-forward mechanisms. (…) Another proposal would allow patients to choose between medicines whose efficacy has been determined in different manners. There is also a suggestion to use control of pricing to encourage drug developers to move forward in a “progressive” trial design.
The full article: Science 23 September 2011, Vol. 333 no. 6050 p. 1679, DOI: 10.1126/science.1212118
September 21, 2011
Can we gamify healthcare? There are interesting ideas out there. Here are a few that were presented during the event.
Ron Gutman, Founder & CEO of healthTap, presented the main idea behind healthTap: “trustsourcing”. When it comes to the consumption of health-related information online, physicians are the missing piece, he said. healthTap offers a new way for physicians to engage online – with their patients and with each other. They can answer questions to better serve existing patients and attract new ones, and they can virtually “agree” with what colleagues wrote which will automatically “feed” into their own “virtual practice”. I consider the “agree” button the professional networking aspect of the tool. Patients and people looking for health-related information can access the trusted (evidence-based) information 24/7, from anywhere.
I’d be curious to learn how they are going to assess the impact of the tool, e.g. saving time and money, which in the long run will serve as key motivators for physicians in addition to getting recognition and building reputation. Keep reading
Sutha Kamal, Co-Founder and the CEO of Massive Health, talked about leveraging feedback loops, visualizing data to change behavior, and the importance of nuanced goals. They’ll be rolling out early versions of their products over the next couple of months and are looking for feedback. Sign up for one of their first experiments at http://www.massivehealth.com/experiment
Edwin Miller, VP Product Management at Practice Fusion, presented their free solution to transform the Electronic Health Record (EHR) System. According to Miller, 90% of doctors are still using paper charts.
Lindsay Volkmann, Director of Business Development at Keas, talked about how they are harnessing the power of play to encourage employees to get healthy.
For about a year now, they have tested their social game. An average of 40% of the employees sign up and 70% of them stick with the program which resulted in significant behavior changes. Keep reading
Ida Sim, MD, PhD, Professor of Medicine and Co-Director of CTSI’s Biomedical Informatics at UCSF, added another important question to the mix: How can we create a “learning healthcare system”, described in “Open mHealth Architecture: An Engine for Health Care Innovation”, that allows an integrated user experience, analysis and evaluation services, and secure data sharing. View Ida’s presentation
“A Learning Healthcare System that is designed to generate and apply the best evidence for the collaborative health care choices of each patient, and provider; to drive the process of discovery as a natural outgrowth of patient care.” - U.S. Institute of Medicine, Roundtable Charter
September 16, 2011
How important are birthdays? Computer scientist Latanya Sweeney‘s work quantifies the importance of knowing someone’s date of birth when trying to re-identify partially de-identified data. She’s written a series of papers showing how multiple non-name attributes can work together to serve as functional identifiers when matched against publicly available databases like voter lists or public hospital visit data. Per her research, she estimates that:
However, substituting year of birth for the full day-month-year:
September 14, 2011
Research to Action published a great overview article that highlights an “ever-growing open-data source for development statistics in the fields of economics, healthcare, education, social science, technology,” and more.
Including data and statistics within research findings can enhance their impact, however, large tables or spreadsheets of numbers take time to decipher and sometimes the true meaning behind the data itself can be misinterpreted.
Here are some of the tools that the article points out:
- StatPlanet: browser-based interactive data visualization and mapping application to create a wide range of visualizations, from simple Flash maps to more advanced infogrpahics.
- Xtimeline: to create your own timelines of data.
- Gap Minder: to upload data and create an interactive motion charts and graphs.
- Creately: to use Online Diagramming software – purpose built for team collaboration.
- Google Chart Tools: lets you include constantly changing research data sourced online. Google has also released Fusion Tables where you can share, discuss and track your charts and graphs with specific people online.
- Tagcrowd: to upload texts and highlight the most common concepts. The clouds can be exported as images and inserted in a website or power point presentation.
- Wordle: similar to tagcloud; lets you create images out of key phrases and words relevant to your research, great for using in PowerPoint presentations.
- Tableau: a free Windows-only software for creating colourful data visualisations.
September 13, 2011
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)
September 12, 2011 1 Comment
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:
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:
September 9, 2011 2 Comments
Sometimes it feels like UCSF has way too many separate websites, but we’re not the only ones with that problem. The US federal government’s .gov Task Force has identified 1,759 distinct federal websites, most operating under the .gov domain. The .gov Task Force is cracking down on confusing duplicative content, e.g. www.invasivespecies.gov and www.invasivespeciesinfo.gov, or redundant websites like www.centennialofflight.gov, untouched since 2003.
How are they dealing with out-of-control namespace and content?
Harsh, but effective.
September 8, 2011 1 Comment
Web analytics guru Avinash Kaushik outlines a five-step process to understand data about internal search engine usage on A List Apart.
Why is this important?
“Now when people show up at a website, many of them ignore our lovingly crafted navigational elements and jump to the site search box.…All the search and clickstream data you have (from Google Analytics, Omniture, WebTrends, etc.) is missing one key ingredient: Customer intent. You have all the clicks, the pages people viewed, and where they bailed, but not why people came to the site, except where your referral logs contain information from search engines. For example, you can look at the “top ten pages viewed” report in your web analytics tool and know what people saw, but how do you know what they wanted to see? Your internal site-search data contains that missing ingredient: intent. Internal search queries contain, in your customers’ own words, what they want and why they’re there. Once you understand intent, you can easily figure out whether your website has the content your users need, and, if it does, where they can actually find it.”
September 7, 2011
Andy Oram writes about his first Health 2.0 code-a-thon, held in Washington, DC. He discusses the setup, and how five teams of biomedical health technologists competed to build a quick and dirty system over the course of a day. The winning project:
“Team Avanade, the quietly intense team whose activity was totally opaque to me, pulled off a stunningly deft feat of programming. They are trying to improve patient compliance by using SMS text messaging to help the patient stay in contact with the physician and remain conscious of his own role in his treatment. A patient registers his cell phone number (or is registered by his doctor) and can then enter relevant information, such as a daily glucose reading, which the tool displays in a graph.”
There will be a Health 2.0 code-a-thon in San Francisco September 24-25. Anyone interested?
September 6, 2011
We do some limited of search terms on CTSI web properties, but this is a big gap, per user experience author Lou Rosenfeld in his new book Search Analytics for Your Site. Rosenfeld’s the author of the seminal Information Architecture for the World Wide Web, so when he speaks, I tend to pay attention. An interview in O’Reilly Radar digs into the details of what analyzing search data in internal search engines and systems:
“[Site search isn't] necessarily overlooked by users, but definitely by site owners who assume it’s a simple application that gets set up and left alone. But the search engine is only one piece of a much larger puzzle that includes the design of the search interface and the results themselves, as well as content and tagging. So search requires ongoing testing and tuning to ensure that it will actually work.
“[Site search analytics Does SSA reveal user intent better than other forms of analytics?
I think so, as the data is far more semantically rich. While you might learn something about users’ information needs by analyzing their navigational paths, you’d be guessing far less if you studied what they’d actually searched for. Again, site search data is the best example of users telling us what they want in their own words. Site search analytics is a great tool for closing this feedback loop. Without it, the dialog between our users and ourselves — via our sites — is broken.”