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

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 – A Model for a Future Research Portal at CTSI, and perhaps even UCSF?

This site is interesting because it helps researchers perform a variety of tasks and supports their online community. At the same time, it provides clear paths to access more information without overwhelming the user. And btw, the goal of the site is easily comprehensible.

LabLife is free for academic labs. We recently learned that UCSF postdocs are using it frequently. And they’re not the only ones, according to LabLife over 1800 labs from 1200 institutions world-wide are using the site.

Here are a few examples how the site supports several aspects of a researcher’s lab life:

  • searching for products,
  • coordinating purchases (preventing ordering mistakes),
  • managing (tracking) reagents, documents, and data,
  • searching for jobs and publications, and
  • sharing information with colleagues and the community.

What do you think?

Open Notebook Science

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:

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.

Scientists, Social Media, and Web 2.0

Here are two interesting postings regarding science and the “new web”.

First, how do most labs view the use of social media?  Not very highly, if you believe the results from a recent survey by Lab Manager Magazine:

Laboratories are at the forefront of research and analysis. But when it comes to communication, they are followers rather than leaders and can be very slow to adopt innovations. The use of social media is a case in point, as a recent survey of nearly 200 lab managers revealed. There are six good reasons for labs to explore the opportunities offered by the social media…

This could also be part of a bigger event, which some say is the demise (or maybe transition) of science 2.0.  As David Crotty argues in “Not with a Bang: The First Wave of Science 2.0 Slowly Whimpers to an End“:

The Nature Network launched in 2006, organized around researchers in Boston, then went global in 2007, five years ago. It perhaps offered the high-water mark in terms of the irrational exuberance by publishers and other companies in building big Web 2.0 tools for scientists. For a time, the widespread adoption of these tools seemed inevitable, and business models were an afterthought when investing in revolutionary new technologies.

Five years on, reality has reared its ugly head, and, as is often repeated here at the Scholarly Kitchen, culture has trumped technology. It turns out that what works well for some cultures does not immediately translate into success in others. Rather than focusing on the needs of the research community, much of what passed for Science 2.0 was an attempt to force science to change — to make the culture adapt to the tools rather than the other way around.

Do we see either of these phenomena in our day-to-day interactions?

World’s first crowdsourced clinical trial?

PatientsLikeMe, an online community where individuals can track their conditions and compare symptoms with algorithmically-similar patients, just published in Nature Biotechnology what it calls  “a patient-initiated observational study refuting a 2008 published study that claimed lithium carbonate could slow the progression of the neurodegenerative disease, amyotrophic lateral sclerosis (ALS).”

The story in the Wall Street Journal adds:

“A new clinical trial found that lithium didn’t slow the progression of Lou Gehrig’s disease, but the findings released Sunday also showed that the use of a social network to enroll patients and report and collect data may deliver dividends for future studies. The study was based on data contributed by 596 patients with the disease, formally called amyotrophic lateral sclerosis or ALS. By showing that the drug didn’t have any effect on progression of the condition, it contradicted a small study three years ago that suggested such a benefit was possible. The new study, published online in the journal Nature Biotechnology, represents an early example of how social networking could play a role in clinical trials, an area of medical science with strict procedures that many would consider especially difficult to apply in the online world.” [via]

Read more: