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.
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…
Image Credit: Kees Straver at flickr.com
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?
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”.
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,…”