Using Research Networking Effectively in Academia: UCSF-CTSI Team Presents On National AMIA Panel

/ leslieyuan

Three of us from the Virtual Home team at CTSI went to this year’s AMIA (American Medical Informatics Assoc) meeting in DC and presented on a panel with Griffin Weber of Harvard University. The panel was called “Four Steps to Using Research Networking Effectively at Your Institution”

Griffin spoke on cutting edge features of research networking tools, such as linked open data and social network analysis.

Eric Meeks of UCSF spoke on standard APIs, such as OpenSocial, to leverage a community of developers, I spoke about incentivize usage and understand your audience, and to round it out, Brian Turner spoke about using data, tools and strangers to improve user interfaces.

The panel presentation was a 90 minute break out session and we were happy to have a good turnout and an engaged audience. I think that the work that UCSF has put into the ‘social engineering’ of the tool has really paid off. Our usage and engagement numbers are on the rise and comparatively speaking, Griffin mentioned that our traffic is about 5-times that of what Harvard Profiles is currently getting.

In addition, Eric also had a poster session at the meeting!

The UCSF presentations will be up on Slideshare, available on the CTSI channel and via our individual UCSF profiles:

http://profiles.ucsf.edu/ProfileDetails.aspx?From=SE&Person=5333232
http://profiles.ucsf.edu/ProfileDetails.aspx?From=SE&Person=4621800
http://profiles.ucsf.edu/ProfileDetails.aspx?From=SE&Person=5333232

Personalized email checklist

/ Anirvan Chatterjee

As we consider the role that personalized email might play in helping connect people to our services, it’s useful to look at Matthew Hayes’ simple three-point checklist on adding value to personalized email communications. An excerpt:

“The best two sources of data to use for versioning are declared data (preference center/welcome program) and behavioral data (browsed and click data). A component of regular, calendared email marketing should be relevant. Preference center data is the most relevant at time of action or update. Integrate this data into welcome series emails when they have just selected their preferences. Another clear action that begs for follow-up is when customers update their profile. Deliver a tailored communication stream according to their updates to bring greater relevance to your communications with them.  Browsed and clicked data, although harder to implement, can give you the biggest response return. Try versioning a component of the message based on recent website browsed data and recent email clicked data. Both sources will add value to a component of regular communication.”

[Link]

Surprise: Twitter unpopular with scholars

/ Anirvan Chatterjee / 3 Comments

Jason Priem, Kaitlin Costello, and Tyler Dzuba, graduate students from UNC, examined Twitter usage for over 8000 scholars from five American and British universities.

The results? Sorry Twitter. Scholars are just not that into you.

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Real-Time Stats from Google Analytics: Could we integrate the data with our UCSF Profiles activity stream and future dashboards?

/ Katja Reuter / 2 Comments

I’m wondering what our tech team thinks about that…  

The “New Version” link is in the top right of Google Analytics. Real-Time reports are in the Dashboards tab (though they will move to the Home tab in the updated interface next week) .

More information

Are you thinking about eTrails? Andy Grove does too…

/ Katja Reuter

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

Notes from the 2011 Medicine 2.0 Summit at Stanford

/ Katja Reuter / 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:

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

/ Katja Reuter

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.

The importance of birthdays

/ Anirvan Chatterjee
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: