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.

How Can We Make Biomedical Studies More Inclusive?

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.

Compelling Video Describes New Visualization Tool “Many Eyes”

It can be challenging to create animated video that conveys a complex message. Here is a great example that shows it’s doable – mind you, without a single spoken word.

A 60 second social story about developing and refining ideas, gaining insight and sharing through community; all based on the premise that many sets of eyes are better than one!

Take a look and let me know what you think. – Btw, the visualization tool “Many Eyes“, developed by IBM, is worth a look as well.

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?

“No Health Without Research”

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

IRB Approvals…A Need for Speed?

The Institutional Review Board (IRB) plays a crucial role in the process of approving and overseeing clinical trials.  Unfortunately, the time required for protocol review is often an area of great frustration for all parties involved.  In 2009, the Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP) surveyed 196 of their client organizations, and found that the average time from protocol submission to approval by the convened IRB was almost 49 days.

While there are many factors that contribute to these long review times, improvements can be made.  Recently, the University of Maryland’s School of Medicine IRB has reported dramatic results:

Last March it took 35 days for a full Institutional Review Board (IRB) approval for a clinical trial from the University of Maryland’s School of Medicine, which reviews more than 1,000 applications annually. This March, IRB approval time dropped to 21 days, and just 13 days in February.

And those faster approvals were completed with a staff of just three full-time analysts and four coordinators, compared to eight full-time analysts at this time last year.

Reducing the time for investigators to gain IRB approvals required the School of Medicine (SOM) to streamline its business processes, retrain its staff and alter its hiring practices, to be able to do more with less. A key part of this paradigm shift was the development of new procedures and an investigator’s toolkit complete with essential documents, including up to 40 checklists and 30 worksheets that make the submission process more efficient.

Part of Maryland’s new procedures came from working with the Huron Consulting Group, who provide a free set of tools to help IRBs streamline their procedures.  Huron will also be offering a free webinar on May 25th to discuss a model for improving IRB operations.

Addressing health literacy

Clear communication is hard enough as it is, but the stakes are particularly high when it comes to health communication. According to a recent story on health literacy in the Washington Post:

“An elderly woman sent home from the hospital develops a life-threatening infection because she doesn’t understand the warning signs listed in the discharge instructions. A man flummoxed by an intake form in a doctor’s office reflexively writes ‘no’ to every question because he doesn’t understand what is being asked…Studies have linked poor health literacy, which disproportionately affects the elderly, the poor and recent immigrants, to higher rates of hospital readmission, expensive and unnecessary complications, and even death. A 2007 study estimated the problem cost the U.S. economy as much as $238 billion annually…[E]ven highly educated patients are affected, particularly if they’re stressed or sick. She cites the initial reaction of former New York mayor Rudolph Giuliani, who thought he was cancer-free when his doctor told him several years ago that his prostate biopsy was ‘positive.’ Actually, a positive biopsy indicates the presence of cancer. ” (via)

The story references Health Literacy Advisor software, a Microsoft Word plug-in that “operates like a spell-checker and scans a document for its readability and its health literacy. When it finds words, terms, or writing that clogs comprehension or reduces health literacy, it highlights these terms and offers ‘health literate’ alternatives.” While software’s not a silver bullet, it might help get us to a point where verifying the readability/usability of critical health communication might be considered at least as important as checking for typos.

Learn more:

Textual usability in government

Long form web readingEnjoy obfuscated IRS forms? You might soon be disappointed. President Obama signed The Plain Writing Act of 2010 in October, mandating that federal agencies use writing that is “clear, concise, well-organized.” The Office of Information and Regulatory Affairs just released their guidance on how federal agencies should comply with the act, mandating that agencies train employees to write plainly and clearly, and designate a senior official to ensure implementation.

PlainLanguage.gov has great examples of how much plain writing can improve textual usability:

A directive from the National Marine Fisheries Service:

Before: “After notification of NMFS, this final rule requires all CA/OR DGN vessel operators to have attended one Skipper Education Workshop after all workshops have been convened by NMFS in September 1997. CA/OR DGN vessel operators are required to attend Skipper Edication Workshops at annual intervals thereafter, unless that requirement is waived by NMFS. NMFS will provide sufficient advance notice to vessel operators by mail prior to convening workshops.”

After: “After notification from NMFS, vessel operators must attend a skipper education workshop before commencing fishing each fishing season.”

A training document from the Veterans Benefits Administration:

Before: “The second change in the law provides an opportunity to resume work without affecting your entitlement to compensation at the total disability rate. However, this alteration in the law does not modify the requirement that you immediately report any employment to this office.”

After: “The law now says you can go back to work without losing your ability to receive total disability compensation. You still have to let us know right away when you do go back to work.”

An NIH factsheet for the general public:

Before: DNA test for Charcot-Marie-Tooth disease: Geneticists and cell biologists have exploited a neurologically impaired “pale and trembling” mouse strain, in conjunction with new genomic technologies and information from the known mouse and human chromosomal DNA sequences, to rapidly identify a mutation that causes a subtype of the Charcot-Marie-Tooth neurological disorder that affects one in 2,500 people in the United States.  Knowledge of the specific gene defect will enable development of a DNA test to confirm the diagnosis in patients and predict risk for family members.  The disorder presents with progressive arm and leg pain that that begins in early adulthood and leads to difficulty walking and manipulating objects.  The mutation in the FIG4 gene leads to a deficiency of a signaling phosphatase enzyme that is important in maintaining neurological connections in specific regions of the brain as well as in peripheral sensory and motor nerves.

After: Gene Found for Charcot-Marie-Tooth disease: Charcot-Marie-Tooth disorder, one of the most common inherited neurological disorders, affects one in 2,500 people in the U.S. Its symptoms start in early adulthood and include progressive arm and leg pain that leads to difficulty walking and manipulating objects. Using a special strain of mice, new genomic technologies, and information from the mouse and human genome sequences, researchers rapidly identified a mutation that causes a subtype of the disease. Knowledge of the specific gene defect will enable development of a DNA test to confirm the diagnosis in patients and predict risk for family members.

Learn more:

Friday Fun: Translational Music?

She Blinded Me With Science

How about a little science silliness for a Friday?  After all, you can’t have funding without the “fun”!

Did you know that there’s a strong musical undercurrent running through our greatest science labs?  Of course, music may have beneficial health effects, interesting physiological roles, or even lead to strange injuries.  But primarily, scientists want to express their feelings in song.  Here are two of my favorites, but I’m sure that there any others out there.  Post some great  links in the comments, and be sure to have a fun Friday!



Turning Science Communication into a Dialogue

The Stanford School of Medicine managed to promote science stories broadly without issuing any press releases. At the national CTSA Communications Meeting, John Stafford, New Media Strategist at Stanford, shared some insights how this worked.

Depending on the science story, they posted what’s newsworthy on their blog Scope , Twitter, Facebook, Flickr, and – very important – they successfully leveraged the informal relationships with their “blogger friends”. As a result, some of their stories made it into leading science magazines and newspapers.

But the story doesn’t end here: John also demoed a few online monitoring tools to measure media reach and brand leadership. These tools provide dashboards for monitoring how many and what types of media outlets pick up science stories, and even what attitudes readers have towards those stories. Here is a list of tools that might become useful to some of our organizational initiatives:

  • Radian6: Provides a platform to listen, measure and engage with customers across the entire social web.
  • ScoutLabs: A self-serve, web-based tool that includes natural language processing techniques for sentiment and tone scoring. Read article
  • Sysomos Heartbeat: Provides constantly updated snapshots of online conversations.
  • General Sentiment: Media Measurement Dashboard, Reporting Service, and Data API.
  • Jive: Social media monitoring, engagement, and measurement.
  • Klout: Helps you identify people you might want to start a conversation with.
  • Cotweet
  • Tweetreach

For those who still seek more, Stanford will be hosting a social media conference “Medicine 2.0” in September this year.