Social Capital in Networks

September 27, 2011 by

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.

Social Capital in Networks.

 

Filed under Research Networking, Social Media, Social Networking Tagged with ,

Are you thinking about eTrails? Andy Grove does too…

September 22, 2011 by

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

Filed under Communications, Participant Recruitment

Notes from the 2011 Medicine 2.0 Summit at Stanford

September 22, 2011 by 3 Comments

Some argue that as technology advances it turns into a barrier and prevents essential human interactions, such as at the bedside. Even though this is a concern that we need to address, the Medicine 2.0 Summit 2011 provided a lot of examples that showed how technology can turn into a powerful mediator.

For those interested who did not get the chance to attend the event, here is a list of the main topics and initiatives presented that use social media, mobile computing applications, as well as Web 2.0 in healthcare and medicine to create new ways for people to connect. Please feel free to add your impressions and ideas of the summit and conference. Thanks!

1. If you are interested in learning from ePatients on how to build and leverage communities of practice and participatory medicine, you might want to explore the following blogs and platforms: 

  • Amy Tenderich’s blog Diabetesmine.com,
  • SmartMobs, authored by Howard Reingold, who was diagnosed with colon cancer and shared his experience on a blog called Howard’s Butt
  • PatientsLikeMe, where more than 115,000 members with over 1,000 conditions share their experiences to see what interventions are working for others

2. Patients have been connecting for some time. However, how can we help connect physicians and patients in a meaningful way? During the session “The Healthcare Transformers”, the panelists presented their views on personalizing healthcare and new ways for physicians and patients to communicate. 

  • Jay Parkinson, founder of HelloHealth and Futurewell, shared his passion about using creative design to improve health — and a few critical lessons learned (including” innovation is lonely” and “colleagues are critics”) as he and colleagues opened a “virtual clinic”, a “web-based patient communication, practice management and electronic health record in one solution”.
  • Lee Aase from the Mayo Clinic Center for Social Media gave a very entertaining talk on social media in the spirit of “Suus non ut Difficile” (It’s not that hard).  See one of their latest success stories: “When Patients Band Together – Using Social Networks To Spur Research for Rare Diseases”. They are very proactive about arming their health care professionals with the right tools to leverage social media for their successful communication. They even started a “Social Media Residency”. Aase also introduced the Social Media University, Global (SMUG), a post-secondary educational institution dedicated to providing practical, hands-on training in social media to lifelong learners.
  • Bryan Vartabedian, pediatric gastroenterologist, writes an interesting blog 33charts  about “the convergence of social media and medicine”.
  • Wendy Sue Swanson, practicing pediatrician, mother, and author of SeattleMamaDoc, walks a fine line and shares resources and methods that she learns from her patients, friends and family, both in and out of the field of medicine. She applies the concept of storytelling to achieve her goal of helping parents decipher some of the current medical news.
  • Ron Gutman, founder and CEO of HealthTap , who we wrote about in our earlier post, presented his solution to ending health care communication in silos. Some of the latest updates include 1) peer review features which will help give great questions more weight in the HealthTap environment, 2) offering a mobile solution, and 3) allowing participating doctors to be notified of questions coming from local patients.

3. “The Knowledge Revolution”: If you are interested in using innovations in Medical Education, you might find the following projects of interest:

  • Bertalan Mesko from Webicina.com provides curated medical social media resources in over 80 medical topics in over 17 languages to help patients and medical professionals access the most relevant social media content in their own languages on a customizable, easy-to-use platform for free.
  • Parvati Dev from Clinispace presented their virtual, 3D virtual training environment for healthcare professionals where learners can practice on realistic virtual medical scenarios and recover safely from errors.

4. The panel on  “The Interconnected Life” discussed social tools and platforms such as Epocrates, Google Correlate, which finds search patterns which correspond with real-world trends, and Quora.

5. During the panel “The New Scientist”, Michael Conlon presented VIVO , an “open source semantic web application”, a tool that is – like Profiles, Loci and others –  used or being implemented by universities across the nation to enable and support scientific collaborations and expertise discovery. 

  • Jan Reichelt, Co-Founder and President at Mendeley, talked about how the tool, a free reference manager and academic social network, helps investigators organize their research, collaborate with others online, and discover the latest research.
  • Peter Bienfield from PlosOne reminded us that most of the 1.5 Million papers published every year are still “closed access”. However, as established publishers experiment with “open access”, e.g.,  Sage Open , BMJ Open , Biology Open ,and Scientific Reports ,  they validate the model…
  • And, David Pescovitz explained how he is looking for “signals” to identify far-out ideas. He is editor for Boing Boing and MAKE as well as research director with the Institute for the Future.

6. Dennis Boyle, IDEO Founding Member and Partner, gave an interesting closing keynote on “design thinking” and “a human-centered approach to innovation.” He highlighted some of their recent projects… worth exploring….

 More information:

Filed under Collaboration Tools, Communications, Profiles Research Networking Software, Search, Social Media, Social Networking, Translational Research, Twitter, UCSF Profiles, VIVO

Notes from the Digital Health Symposium: Interactions, Games, and Incentives in Healthcare

September 21, 2011 by

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.

Keas has combined gamification techniques with wellness incentives in an effort to get officemates battling one another to get healthier.

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

More information:

The event was co-sponsored by UCSF’s CTSI.

Filed under Collaboration Tools, Communications, Research for Better Health Tagged with , , , , , , , ,

The importance of birthdays

September 16, 2011 by

Birthday Cake

"Birthday cake" by Will Clayton, Flickr

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:

  • 87% of Americans can be uniquely identified by the combination of date of birth, gender, and ZIP code
  • 53% of Americans can be uniquely identified by the combination of date of birth, gender, and city
  • 18% of Americans can be uniquely identified by the combination of date of birth, gender, and county

However, substituting year of birth for the full day-month-year:

  • 0.04% of Americans can be uniquely identified by the combination of birth year, gender, and ZIP code
  • 0.04% of Americans can be uniquely identified by the combination of birth year, gender, and city
  • 0.00004% of Americans can be uniquely identified by the combination of birth year, gender, and county

Read more:

Filed under Friday Fun

Take Advantage of Web-Based Tools to Present Complex Data

September 14, 2011 by

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.

View all and read the original article

Filed under Communications, Open Science, Research Tools, Visualizations

Open data projects should start with user needs

September 13, 2011 by

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)

Read more:

Filed under Public Outreach

How to run a hack day

September 12, 2011 by 1 Comment

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

Read more:

Filed under Communications, Public Outreach, UCSF Profiles, Upcoming Conference

Too many websites?

September 9, 2011 by 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?

  • there’s now a freeze on the issuance of new executive branch .gov domains, up till the end of 2011
  • 25% of executive branch .gov domain websites must be eliminated or redirected by the end of September 2011
  • 50% of executive branch .gov domain websites must be eliminated or redirectd by July 2012

Harsh, but effective.

Read more:

Filed under Communications

How to analyze internal site search stats

September 8, 2011 by 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.”

Read more:

Filed under Web Analytics

Health 2.0 code-a-thons in DC, SF

September 7, 2011 by

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?

Read more:

Filed under Upcoming Conference

Mining internal search engine data

September 6, 2011 by

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.”

Read more:

Filed under Search, Web Analytics

Mayo Clinic Finds Social Media Valuable Tool to Recruit Study Participants for Rare Diseases

September 1, 2011 by

Recently, a researcher told me that he’d be interested in learning more about using social media and networking sites to recruit participants for research studies. Here is an example that the Mayo Clinic shared this week.

Through patient-run websites dedicated to heart conditions and women’s heart health, a team of cardiologists is reaching out to survivors of spontaneous coronary artery dissection, also known as SCAD, a poorly understood heart condition that affects just a few thousand Americans every year.

The study landed 18 participants in less than a week, six more than could participate in this pilot of 12 patients. The remaining volunteers are eligible to participate in a new, larger study based on the initial study’s success.

The new research seeks patients through conventional and social media outlets and aims to build a virtual registry and DNA biobank of up to 400 SCAD survivors and their relatives. The database will help physicians conduct more detailed analyses of treatment strategies and factors that affect prognosis and better understand the possible genetic basis of some SCAD cases.

“Patient leadership in this is huge,” says study co-author Lee Aase, director of Mayo Clinic’s Center for Social Media. “Designing research protocols to study rare diseases and then recruiting enough patients to participate is extremely difficult for busy physicians, but patients with rare diseases are highly motivated to see research happen.”

Keep reading

Filed under Communications, Participant Recruitment, Social Media, Social Networking

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