Acquired Immuno-deficiency Syndrome (AIDS) is potentially fatal disease caused by HIV virus. AIDS renders our body defenseless against any and every infection in the world by killing the immune system.
The currently available treatment - highly active anti-retroviral treatment (HAART) is very effective in giving people a few more decades to live. However, HAART has 2 major problems:
It is not a cure and the medications have to be taken lifelong
The side effects of treatment at times may be as bad as cancer chemotherapy
Therefore, it is of imperative importance that we find a cure for this deadly disease which is safer (ideally without side effects) and does not need to be taken over a protracted period of time.
Mortality data of HIV/AIDS in the world and US:
Video: “Heartrending pictures of AIDS” in Zimbabwe, Africa presented by Kristen Ashburn at TED.
(Choose flash player version)
Video:BLOODLINE: AIDS and Family is a short documentary movie by Kristen Ashburn and takes an intimate look at the harsh reality of the AIDS pandemic in Africa (available for online viewing on Mediastorm Project website). Video: HIV 101 - This is a 10 minute video explaining HIV and AIDS (YouTube Link)
A prominent scientist X publishes a clinical trial that Drug A is effective in a particular disease.
Another scientist Y publishes another article reinforcing that Drug A is indeed an effective treatment.
Then several small studies are done which show that Drug A has harmful side effects. Some of these get accepted in prominent journals, while others are rejected. Five years later, FDA discovers to its surprise (!!!!) that Drug A is indeed associated with harmful side effects.
The big question is - Is there any way to prevent this?
Welcome to open source scientific data sharing.
Open source data sharing is similar to open source software, where not only the end result (i.e. software) but also the source code is given away for free. Open source data sharing therefore should aim to not only have all the scientific articles available for free but should also include the raw data that was generated during the course of the experiment or clinical trial.
There are thousands of scientists in the world who can benefit from this data and come up with amazing results. Probably, if the data for Vioxx and Vytorin studies was available online, their side effect profile would be exposed much earlier by “entrepreneur” scientists.
This talk given by Clay Shirky at TED in 2005 explains why we need to move from institutionalization towards open collaboration (which can only be enabled by data sharing).
Of course, there are certain differences between his and my proposal. He is giving public the authority to generate data. I am proposing that scientists generate data by careful experiments/clinical trials and publish their results but in addition make the data available for “entrepreneur” scientists to analyze. It is better to have many eyes looking at data rather than a few.
Besides searching for potential side effects in a mountain of data, open source data sharing has bigger benefits. Consider this:
Many NGO’s are currently funding scientific research in the hope of speeding up the process of scientific research to produce results quickly. Stand up to Cancer is bringing the best scientific minds across the world to develop new medications to fight cancer. This is excellent - but it goes back to Clay Shirky’s talk - Institutionalization vs open collaboration. The best brains can generate excellent data and also probably are the best people to analyze it. But, this data generated should be made available for all other scientists on this planet to analyze and build upon.
Historically most inventions happened by accident. Entrepreneur scientists can make these accidents happen more often - only if given access to scientific data.
Scientists have a discovered a gene called Npas4 that keeps brain activity in check. Targeting this gene may one day lead to drugs that can help autistic children.
Scientists say they have pinpointed a gene in the brain that can calm nerve cells that become too jumpy, potentially paving the way for new therapies to treat autism and other neurological disorders.
The brain is continually trying to strike a balance between too much and too little nerve cell activity. Neurologists believe that when the balance tips, disorders such as autism and schizophrenia may occur. They are not sure why neurons (nerve cells) go berserk. But Greenberg (Neurobiologist at Harvard Medical School) says he and his colleagues located a gene in mice and rats that helps keep neural activity in check—and may one day be manipulated to prevent or reverse neurological problems.
This Medco analysis implies that the perceived therapeutic benefit of generics over brand name in the minds of patients may not be that significant as earlier thought.
The analysis also reveals that reaching the Coverage Gap dramatically stimulates the use of generics among all Medicare recipients. During the initial phase of the benefit, when the plan provides drug coverage, one-third of the medications used daily by beneficiaries were generics and two-thirds were brand-name drugs. Once beneficiaries reached the Gap and were responsible for the full cost of the drug, those numbers flip - generic usage rises to 71 percent and brand-name use falls to 29 percent.
What other factors could be playing a role and how do we counteract it?
Over half of all supporting trials for FDA-approved drugs remained unpublished greater than 5 y after approval. Pivotal trials and trials with statistically significant results and larger sample sizes are more likely to be published. Selective reporting of trial results exists for commonly marketed drugs.
We found that there was indeed a pattern that favorable studies were more likely to be published than unfavorable trials,” saidIda Sim, associate professor of internal medicine at UCSF and the lead author.
