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.
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.
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.
Enjoy 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.
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?
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.
For those who still seek more, Stanford will be hosting a social media conference “Medicine 2.0” in September this year.
I guess most researchers look for money to explore ideas. With little funding they can run initial experiments and find out if an idea is worthy of a grant proposal. But processing small donations comes with difficulties for researchers.
The website SciFlies is preparing to offer a solution. At SciFlies researchers can sign on to build a profiling profile to present themselves and their research projects. On the profile they can present their research vision, past accomplishments, interests and even their current reading list. Website visitors can then donate and support the projects they find most worthwhile. SciFlies provides a mechanism that allows small financial contributions to accumulate and get delivered at some later point.
This model may be interesting for us and the Virtual Home portal, once we think about ways to reach out to the community. It could create long-term interest in researchers and their work. But more importantly, it provides a powerful incentive for researchers to update their profiles.
By the way, the thoughts behind the name “SciFlies” are pretty unique. It says: “It’s a homage to the ubiquitous fruitfly research model, a shorthand description of the goal to create a ‘swarm’ of science supporters, and a reference to ‘fly’, a slang term for cool.”
P.S. The SciFlies website is work in progress. I will update the blog as soon as the website is fully launched.