‘Imagine a world’ is a phrase we are using quite a deal at the moment as we try to tell the story of how our information systems will come together in April 2014 to deliver an integrated solution for the performance management of clinical research. In two years time it will be the year that Marty McFly went back to the future, and yet we don’t have the hoverboard seen in the sequel, and that is rubbish! But we will have a Information Systems that effectively change the game. This blog is an imagine a world scenario…

“Data in clinical research? You mean information and insight don’t you?” yelled the latest participant in the clinical trial we have established to consider the impact of a new drug on hearing problems brought about by the loud music available to the teenagers of the 2020s.

Information gathering is now so much easier than 17 years ago. Here in 2030, the trials of 2013 are just delivering the drugs they were considering into man, whereas now, with the access to real time data and the mobilisation of patient access to information and the enablement of the clinical trial participant through the implementation of truly mobile data systems, new drugs are available to man in less than half that time. Information is no longer the longest pole in the tent!

Let me explain. We now have a global standard recognised across all government and life-sciences industries for the sharing of information and the collaborative recruitment of patients. If a scientist in Boston, USA needs a participant with a rare disease and a set of criteria that are complex, the scientist is able to place that call for participants within the information system, asking for a patient globally to come forward to take part in the clinical trial. The scientist in Boston, USA can easily recruit a patient from Barnsley, England. The additional difference is that now all clinical trial information is now truly open and participants are far more willing to put themselves forward, not just for the good of mankind but often, due to the reduction in the time drugs take from bench to man, for the good of themselves.

So that’s information systems aiding recruitment and opening up the data. The actual collection of data is now also resolved, not always on a global scale but far more opportunities are in place. With the advent of the truly electronic healthcare record across care settings came the ability to access real time data about a patient in a clinical trial. With the new anonymisation capabilities within these systems, the life-sciences companies and academic researchers are able to track any patient episode through the clinical system, knowing exactly the impact of illness on trials and understanding efficacy of drugs in a trial.

Gone are the days of drug recall or long replayed clinical trials. The volumes of participants can also be much higher as the information systems to gather critical information are automated directly from the clinical system of each country taking part. It is therefore easier to have large numbers of participants utilising access to real world data and then through the open agreements between companies there is far less running of the same trial with a different colour label on the drug, as companies are able and willing and public opinion has ‘facilitated’ them in the sharing their information.

For the participant, the most exciting information enabled change though has to be the collection of information itself. When they first became available, solutions to monitor the health of the person were marketed to the worried well: systems to enable a person to track their own sleep patterns, heart rate and insulin levels. These systems have been significantly developed over the last 17 years and they are now part of modern day life. The ability to monitor key health indicators from the clothes we wear is common practice. To have the ability to update simple patient logs through items that the participant wears or uses all the time has had two key impacts, the number of willing participants for clinical trials has increased as taking part in a trial is no longer intrusive on the daily life and taking part in a trial can often provide access to the latest “toys” for communicating health scenarios and clinical outcomes.

All in all the impact of the modern information system on the ability to make new discoveries that make people well and keep them fit and healthy has been staggering. The life-science system now recruits patients in the volumes they require at the speed they need to. The transparency and openness of the information they gather has increased the public perception of clinical trials and the drug companies and has reduced the repetition of clinical trials significantly. Empowering patients through access to systems that enable them to monitor and evaluate their status in a clinical trial has further enabled opportunities for real time data and the ability to trace the efficacy of new drugs beyond the older phase trial approach.

Marty McFly visits 2015 in Back to the Future 2, the setting above is set slightly ahead of that, but not that much, many of the elements described are possible now, they simply need mainstreaming to truly deliver data utopia for clinical research.