AMIA 2012 Joint Summit: a report back in tweets

March 23, 2012 by 3 Comments

Eric, Leslie, and I from CTSI at UCSF’s Virtual Home team spent the past three days at the AMIA 2012 Joint Summit in San Francisco.

Here’s some of what was happening on the researcher networking, social networking, knowledge representation fronts, and public search front, via Twitter:

Other tweets that caught my eye from the rest of the conference:

Filed under Collaboration Tools, Research Networking, Research Tools, Researcher Profiles, Search, Social Media, Social Networking, Translational Research, Twitter, UCSF Profiles

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

Pfizer Announces First U.S. “Virtual” Clinical Trial Allowing Patients to Participate Regardless Of Geography

June 22, 2011 by 2 Comments

The randomized pilot study, called REMOTE, uses mobile phone and web-based technology (e.g. electronic diaries, online testing tools, a dedicated website) to collect the necessary data for the trial without clinic visits.

Investigators plan to enroll about 600 patients from about 10 states across the United States. Pfizer will compare results to previous clinical trials and assess whether virtual trials can save time and obtain the same results as traditional ones, or perhaps even more reliable data through increased patient compliance, lower withdrawal rates and real-time data collection.

Although not all clinical trials could be done remotely, if this pilot proves successful, it might be an interesting model for our emerging UCSF-CTSI Participant Recruitment Service.

Watch the animated video that outlines the trial’s basics to patients

More information:

Filed under Communications, Participant Recruitment, Research for Better Health, Translational Research, Video on the Web

Open Notebook Science

May 31, 2011 by 2 Comments

Sunday
Thinking about our recent posting  regarding project and document management, along with a number of postings on open source data, people might be interested in learning more about a movement that takes open source to a basic level.  As described in Wikipedia:

Open Notebook Science is the practice of making the entire primary record of a research project publicly available online as it is recorded. This involves placing the personal, or laboratory, notebook of the researcher online along with all raw and processed data, and any associated material, as this material is generated. The approach may be summed up by the slogan ‘no insider information’.

While not everyone thinks this is a great idea, a number of labs in a variety of disciplines have begun to embrace the concept.  Similar to the Creative Commons movement, there are a number of ways to implement open science in your lab (with associated logos, of course!).

So, does open notebook science have a place in biomedical research, and does it have a role in translational science?

Further reading:

Filed under Open Science, OpenSocial, Social Networking, Translational Research

How Can We Make Biomedical Studies More Inclusive?

May 19, 2011 by 2 Comments

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.

Filed under Communications, Participant Recruitment, Public Outreach, Research for Better Health, Translational Research

“No Health Without Research”

May 1, 2011 by

For the first time in its history, the World Health Report 2012 will focus on the theme of research for better health. To “complement and substantiate the key messages” in the report, the WHO and PLoS launched a new initiative to invite the submission of research papers.

Decisions on healthcare are still made without a solid grounding in research evidence, and an impetus is required for this state of affairs to change. Aimed at ministers of health, the report will provide new ideas, innovative thinking, and pragmatic advice on how to strengthen health research systems.

Let your colleagues and researcher friends know…
More info:

Image Credit: Kees Straver at flickr.com

Filed under Communications, Research for Better Health, Translational Research

Biohackers

April 21, 2011 by 1 Comment

Credit: Penguin Books

When we think of Translational Science, we imagine going from bench to bedside to community.  But what if the research itself is happening in the community?  Meet the Biohackers:

These do-it-yourself biology hobbyists want to bring biotechnology out of institutional labs and into our homes. Following in the footsteps of revolutionaries like Steve Jobs and Steve Wozniak, who built the first Apple computer in Jobs’s garage, and Sergey Brin and Larry Page, who invented Google in a friend’s garage, biohackers are attempting bold feats of genetic engineering, drug development, and biotech research in makeshift home laboratories.

In Biopunk, journalist Marcus Wohlsen surveys the rising tide of the biohacker movement, which has been made possible by a convergence of better and cheaper technologies. For a few hundred dollars, anyone can send some spit to a sequencing company and receive a complete DNA scan, and then use free software to analyze the results. Custom-made DNA can be mail-ordered off websites, and affordable biotech gear is available on Craigslist and eBay.

Is there a place for this movement in the CTSI continuum?

Filed under Open Science, Public Outreach, Translational Research

Tangential Thoughts: Robot Scientists for a Better Use of Existing Data – And Why Translational Science May Still Need a Slightly Different Approach

March 16, 2010 by

Is serendipity necessary for innovation? Or in other words: Would an autonomous scientific discovery process that utilizes all available data at the time be incapable of innovation? Some think so. But not researcher Andrew Sparkes and colleagues who created Adam and Eve, two robot scientists, designed to carry out biomedical scientific research. The researchers claim that scientists robots will “make scientific information more accurate, reproducible and reusable”.

Adam and Eve are capable of generating hypotheses about a problem based on information obtained from publicly available databases, designing experiments to test these hypotheses, running the physical experiments, analyzing, interpreting the resulting data – and they even collaborate. Eve, for example, is a prototype system to demonstrate the automation of closed-loop learning in drug-screening and design.

So why not stretching this idea a bit? Could such a robot help support the clinical and translational research process? The authors of the recent paper ”Translational Medicine – doing it backwards” may disagree. They argue that the general approach to hypothesis-driven research poorly suits the needs of translational biomedical research “unless efforts are spent in identifying clinically relevant hypotheses”. As Steinman pointed out, animal models, for example, can lead to results that are the opposite of what is ultimately seen in human disease. So, the authors propose “that hypothesis tested research should follow ‘factsdriven research’ and only when the collection of facts relevant to human disease has been extensive, should hypotheses be constructed to expand beyond what can be directly observed. What is needed is an approach that begins at the Bedside and then goes to the ‘Clinical Bench’.”

I guess once there are public databases available filled with “clinical realities” provided by clinically active physicians and non-physicians, robots like Adam and Eve could frame their research questions accordingly and reverse the discovery process starting with the “human reality”.

Filed under Translational Research Tagged with

Tangential Thoughts: Controversy about Academia and How it May Slow the Search for Cures

June 24, 2009 by

A Newsweek article is making waves. The author Sharon Begley asserts that academia and organized science essentially slow down the path from basic science to a meaningful “cure”. One of her major arguments is that academic science emphasizes basic science and novel discoveries at the expense of research around patient treatments. That explains why this article even sparked the interest of the CTSA. The solution that Sharon Begley offers? – “a powerful director who can get beyond the rhetoric about moving discoveries out of the lab and make it a reality.” In her view “that hasn’t happened yet, six years after a much-ballyhooed NIH ‘road map’ declared such bench-to-bedside research a priority and vowed to reward risk-taking, innovative studies, not the same old incremental research that has produced too few cures.”

But there seems to be disagreement. An interesting blog post comments on this article and provides interesting insights from a researcher’s perspective: “Begley’s criticisms rely on some anecdotal stories from researchers, who either had a hard time getting their research funded, or found their translational research being published in ‘less prestigious’ journals than their or others more basic science research. But there’s no evidence that this is a system-wide phenomena – indeed, I’d counter with my own anecdotes that translational research is currently the new golden child of the area of science I’m exposed to,…”

Filed under Translational Research Tagged with

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