By Gary Palgon, VP Healthcare Solutions, Liaison Healthcare Informatics
If we want better drugs, we need better research. And speeding up drug research means we need both more science and more patients to involve in research. Specifically finding patients with certain demographics and the right condition and stage of diseases is difficult and time-consuming. That is just one of the key topics discussed this week at the Scope Summit for Clinical Op Execs
Jamie Heywood, CEO of PatientsLikeMe, kicked off the conference speaking about the importance of measurement in clinical trials. Gaining access to patients that meet the research criteria quickly is important, but then it’s really important to be able to quickly execute tests with accurate measurements to determine the progress, or lack thereof, a drug or research. Was it the triple cocktail to treat Aids that was great or the low-cost test to determine if it was helping test patients.
Access to information for analysis was discussed constantly throughout the conference. Getting to personalized medicine requires more data, at individualized levels, in order to predict outcomes from like patients. Just announced last week was the game-changing decision by Johnson and Johnson to donate clinical trial data from their own research to other institutions that are performing research.
J & J announced this week that Yale University will be the first organization to take advantage of the offer. Yale will not compete with J & J but they will reap the benefit of the expense J & J already went through and the speed at which they gain access to patient data.
And if you really look at it, more than Yale benefiting from the change in J & J’s approach are the patients that will benefit!
Besides all of the presentations, the highlight for me was a panel discussion where four people who have and do participate in clinical trials spoke about what it is like to be a patient. One has been through 7 trials for bi-polar disorder actually took a job with a testing site. Others have/had two different types of cancer and one high cholesterol. The twenty-plus pages of informed consent was the most difficult part of the process.
We need to give to get. And then let the researches gainbetter access to the best testing and development tools available.
- Are you in favor of donating you de-identified health data to help make research move faster?
- Would you confidentially add your condition to a site for research if you had one?
- Would you participate in a clinical trial if asked or available?
Until next time,