You’re the Researcher. How Do You Spend Research Dollars?
Mar 7 2013 in What Do You Think? by Denise
Yesterday, I moderated the bi-monthly chat on Twitter I co-sponsor with Michelle Seitzer (@seniors4living). Our discussion focused on a variation of this question: How can the government, corporations and researchers help family caregivers?
Over the next few days, I’ll pose the questions to you that I asked during our chat. I’d love to know your thoughts and insights.
So, for today, here’s your question: You run the National Institutes of Health. How would you spend research dollars to help carees and the family members who care for them?
Please share your ideas and thoughts in our comments section, below.
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ejourneys said on March 7, 2013
1. Make all research open access. The US government is beginning to do this (following the UK’s lead), but with various restrictions. For example, the UK’s Open Research Reports seeks to improve access to disease research papers for “the people that really need it. This includes healthcare workers and researchers in developing countries, patient groups and patients themselves as well as the interested public, who are currently charged around $35 for 24-hr access to a single paper” (Jenny Malloy, reporting on the 2011 Open Science Summit). ORR founder Peter Murray-Rust of the University of Cambridge called these people the “scholarly poor.”
2. Work to build bridges among researchers, practitioners, patients, and caregivers, by disseminating information in terms understandable to the layperson and by involving more crowdsourcing/citizen science in research. Much work is already being done by the Public Library of Science (PLoS). Founded in 2000, PLoS had begun as a letter signed by 34,000 scientists from 180 countries. The letter had advocated for the free and public dissemination of research via already-existing online archives. When that didn’t work, PLoS became both a publisher and an advocacy organization for open access. PLoS’s stakeholders include researchers, educators, patient advocates, funders, poliymakers, and the general public. According to its mission statement, “Sharing research encourages progress, from protecting the biodiversity of our planet to finding more effective treatments for diseases such as cancer.”
3. Expand NIH R21, a grant “intended to encourage exploratory/developmental research by providing support for the early and conceptual stages of project development.” NIHR21 goes a little way toward leveling the playing field for researchers who have trouble securing funding because they don’t have a long enough track record.
Trish said on March 11, 2013
Wow! I love all of @ejourneys ideas! I would add finding a more equitable way to distribute the research dollars. For instance, epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke and affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. However, it receives less total funding per patient than Parkinson’s, (as well as Autism and Alzheimer’s). http://www.cureepilepsy.org/news/state-of-epilepsy2010.asp
I don’t want to take away research dollars from other conditions/diseases but I would like to see more research dollars for epilepsy research. I have overheard nurses say that epilepsy is the forgotten disease! How sad is that considering 3 million in the US have epilepsy; 30% don’t have good seizure control and close to 50,000 people die from seizure related reasons.
Phew! I guess I just had to get that out.
Thanks for asking the question, Denise.